What is a Forever Loved session? Here is a video from our 2014 Winter campaign. If you watch this it will help you better explain what I do as a photographer and teh healing it can bring to thousands. The Forever Loved sessions has been created for my most special clients. These sessions have been known to bring support and healing to everyone involved.
LOVED AND LOST:
Have you ever lost someone you loved and wanted just one more conversation? One more chance to make up for the time when you thought they would be here forever? If so, then you know you can go your whole life, recounting those good days and collecting more new days, but none will outweigh the one that you wish you could have back.
I have been an innovator with these type of sessions because I feel so passionately about them. I feel it brings a means of closure for the families. I customize sessions based around the loved one’s story and we will honor and pay tribute to them in the most beautiful, creative and tasteful ways. Although these sessions can be extremely emotional, they are also very moving and fulfilling for all involved.
These are the sessions are what ignites my photographer fire! I work with people faced with very unique circumstances and help them establish memories that will last a lifetime. At times my clients may be terminal, have healed from an illness, or may be currently living with a disorder. I pair up with my clients if they are in need to raise money for their situation. We have also been in cahoots with local hospitals in order to gain permission to photograph memories of their loved ones and document their story.
Please contact me if you have a friend or loved one that would be interested in doing such a session. This can bring so much joy and comfort to loved ones during such emotional times.
Forever loved sessions are customized to your family and location and cost $155.00
Check out this months features of our FOREVER LOVED sessions...
© 2014 CREATED BY LINDSEY NATZIC-VILLATORO CONTACT US
Meet sweet "George", his beautiful wife and 3 children. George's hand is at the top holding his family. In February 2012 he was diagnosed with stage 3 esophageal cancer. He was not a smoker nor did he drink. His cancer was caused by acid reflux. Years of erosion can cause Barrett's esophagus which are pre cancerous cells. He was the oldest of 6 siblings. His wife Vanessa said, "he was very much a father figure to his siblings." He was a beloved baseball coach to many kids in the Hemet community, he touched lives through coaching. Family was everything to him. When I went to his house he was very weak, could not even lift his head without assistance. I was going to schedule my session for the following week but his wife Vanessa was worried he would not make it until then. We'll go ahead and check George out!! NOT only did he sit up for me but he SMILED!!! This touched my heart in so many ways, especially to find out he was not to fond of smiling in photos. As weak as the man was he tried so very hard to give me that shot & he did it over and over again! After I left there late friday afternoon his wife told me that he went into a comatose. Sunday morning while I was in church his wife text me that George had passed at 11:35am.
THE LOVE THESE THREE SHARE WILL JUST SHOCK YOUR HEART
When you see an image, what do you look at? Do you look at the colors, the subject, the location? Do you prefer one subject over the next? Most of us never really know the background of an image- they just take a look and decide off hand if it means something to them without really even knowing personally who is actually in the image. That is why I enjoy the heck out of what I do. I am not just a photographer, I am someone that allows you to remember little things long after you have forgotten everything. With that being said prepare your eyes for the sweetest images and heart for the most touching story. Meet Christina, baby Finely, and Lexie. Lexie is now 20 years old but when she was 19 she became pregnant with a baby girl. At that time she knew she could not give her baby the lifestyle she felt she deserved so she and her boyfriend together decided to place their child through adoption. Christina 29 at the time was having issues getting pregnant and felt God was leading them to adoption, so they did everything they needed to apply to do so. Just 2 short months from applying Lexie, and her boyfriend Loren decided the perfect fit was the Smallwood family. Both families decided it would be best for Finely if they had an open adoption. The 4 adults have a great relationship and allow Finely to still spend quality time with her birth parents. Christina and her husband are very secure in their relationship and have built healthy boundaries that benefit everyone. Finely was born 9 weeks early and in the NICU for 5 weeks but Christina and her husband have been there every step of the way. They took baby Finely home as their own from the hospital at 5 weeks old. Finely is LOVED beyond words by many. Lexie I would like to tell you personally I am SO PROUD of the choice you made. I'm sure this felt literally impossible and regardless of how you felt YOU CHOOSE LIFE for your baby girl and that is BEYOND commendable. So with that being said, I hope you all enjoy these images. Meet Birth Mom Lexie (in dark blue), Adoptive Mom Christina (light blue) and sweet 11 month old Finely.
Cancer does not define me
Megan, 28 is battling Breast Cancer and just had a double mastectomy. She starts a new chapter of this journey...Chemo. Before you leave my website please lift her up in your thoughts and prayers. I know God's hand is in the mist of her healing and she's going to come out swing'n beating the heck out of CANCER!
I BEAT breast cancer, now watch me KILL Leukemia
Meet 31 year old Polly.
Sweet Polly has a beautifully, perfect four year old son and a wonderful husband that inspire her battle against the cancer beast every day. I was initially diagnosed with Stage 3 Triple Negative Breast Cancer in March of 2013. I have no family history or significant risk factors and it was a complete and utter shock to be diagnosed. Polly BEAT cancer in January 2014, but in February 2014 she was diagnosed with leukemia. Please pray for her progress and journey.
We love you G! Dec 25 1970-Feb 7 2013
We all sat at The City of Hope praying he would go in peace and he did. German is a man that taught me how to show love and compassion to your friends, how to be an example and how to always be kind to others regardless of the situation. German fought this impossible battle to cancer for almost 2 years. I was there photographing him EVERY step of the way. German, who turned 41 on Christmas day 2012 lived a joyous life, loved by everyone he's ever met. His positiveness for life could change your day for the better in more ways than one and he never complained. In life we are either a person that is impacted by others or a person that impacts others and that was my sweet friend. German will be missed, this BRAVE man will be remembered by us all. Your smile is forever imprinted on our hearts...we love you G!!!! German left behind his beautiful wife and two year old son.
I will fight & continue to fight like you have never seen.
This total Rock star, gorgeous to say the least... has beat cancer 3 times! Breast cancer at age 25, then cancer that spread to bones in 2005, then in 2012 it came back in the left shoulder!! Please PRAY for this sweet lady because towards the end of 2013 after going in for her routine scan they found out the cancer was back and had spread to 9 spots of her bones. She is currently living with cancer and is on oral chemo. However NOTHING can stop this mama! She continues to smile through it, finding peace in her family. I believe she can teach us all a lesson or two on life and how we value each other.
My family agree's I am JUST perfect.
Some of us don't really see the value of life until we hear a story like this sweet little chubs has. Meet 11 month old Evangelina. Evangelina was born with a very rare disease called the SCID (Severe Combined Immune Deficiency) The same disease the "bubble boy had." She has never been out of the house except for doctors visits, she has never played with other children besides her twin sister in her house, she has never seen her parents without a mask on, she has NEVER touched grass or even "people watched" UNTIL yesterday!! I was able to capture moments of this little angel that literally fell straight from heaven. I can't wait to post the rest, her twin sister is JUST as perfect. Say a prayer for this little fighter, she is one heck of a trooper! Thank you for allowing me to be there in those unforgettable moments.
Keeping Fighting Kingsley
Kingsley was 6 weeks old when I photographed him and was born with a VERY rare heart condition. He had open heart surgery at 4 days old and is stronger than ever. His parents are artist in San Diego and they wanted to do his session with natural lighting. Due to his heart condition he is going to need 3 more open heart surgeries by the time he is 5 and his life expectance is 18. I believe GOD has a BIGGER plan for this little man and I am asking you all to pray for his progress. He has already beat the odds placed in front of him and was the most alert 6 week old I have ever seen. I BELIEVE YOU WILL DO GREAT THINGS SWEET BOY.
We will Forever LOVED Our Bruce
Brittni Blanchard writes "My dad loved life, football, golfing, bbq’ing, his backyard, great classic rock music and Coors Light!!! His Girls (Mom, Jamie and Britt) were the most important things in his life!! Then in December of 2010 my Dad was diagnosed with throat cancer. He fought a tough battle but Unfortunately we lost him by November 21 2011. We wish he was here to have met Jaxon but we believe dad met Jaxon before any of us did! We love and miss him everyday."
I was able to photography them together as a family with little Jaxon. I hope you all enjoy these images you now have to keep forever. Your daddy is watching.
I still smile, even with Brain Cancer
Meet 8 year old Jadyn.
Sweet Jadyn was diagnosed with Brain Cancer after have chronic headaches. This little girl is not going down with a fight. She goes to Chemo weekly and radiation daily. I know God has a plan for this sweet girl, and she is going to be her families miracle. Please pray for her progress and recovery.
Tim and Lena Huston
The photo shoot was in memory of Tim's mother Colleen. Lena, Tim's wife writes..."She passed away on 4th of July 2006. Tim and his mother were so close, I can't even explain. One of the things that made me fall in love with this man, was knowing how much he adored his family. He was an only child that was just loved to pieces by his mama. She was a very young 54 when she passed suddenly of a brain aneurysm. She was kept on life support long enough for us to get to Michigan so Tim could say goodbye. Colleen was the life of every party, including our wedding. She lit up every room she was in with her huge smile and amazing sense of humor. You always knew where she stood on an issue and she wasn't afraid to tell you exactly what she thought. lol She is dearly missed every day. I've always said, If the Lord came to me today and gave me the opportunity to give my husband anything, it would be 5 more minutes with his Mom." ♥ What a pleasure it was to shoot both of them. Lena made this memory book for Tim to remember his mother by. I am blessed they now have these photos to add to their memory bank.
I love you Daddy
Meet Jaylee and her mother Megan. Megan lost her Fiance James in a drunk driving accident 3 days after they found out they were expecting their daughter Jaylee. James would have been 32 yrs now, he died at age of 20 and it was 11 yrs this January. Their daughter Jaylee is 10 years old and adores her biological father in heaven. Jaylee does have an amazing step dad "Paul Horton" that has been active in her life since she was one. Jaylee wore a jersey in honor of her dad who loved motorcross and read the eulogy to me next to her dads ashes. These two share a very special bond and I hope I did justice capturing it.
It was a pleasure to shoot you both and be apart of this memory you two now have to cherish forever.
James Mize-Hauser ♥ Forever in our hearts 11/4/80-1/27/01
Meet the little P man
Sweet little 2nd grader Preston has Neurofibromatosis, or more commonly known as NF, is a progressive genetic disorder that causes tumors to grow in or on any part of the body including brain, optic nerves and spinal cord. It has a long list of side effects from cancer and hearing loss to delayed development and learning disabilities. NF occurs in 1 of every 3000 births and our son Preston was diagnosed as an infant. He faces many challenges in school and receives weekly therapies for speech, occupational therapy and adaptive physical education. Preston serves as the student council representative of his special needs classroom and he's always going above and beyond to help the other children. His therapists and aides are always quick to praise how incredibly hard he tries.
"TT" you are loved
Meet Gary, Chantelle, and their daughter Mercedes.
Here you will see pictures I was able to capture of this family honoring their daughter, Mercedes's baby sister Mackenzie.
Mackenzie Leigh Monteleone was born September 5th, 1997. She was always such a happy baby and young girl. Beside the fact she is now gone, many state they are going to miss her contagious laugh the most. On November 4th, 2007 she was in a golf cart accident which left her without oxygen for 30 minutes resulting in an Anoxic brain injury and in a persistant vegitative state requiring round the clock care. She made it well past what any doctor said she would. She passed away on June 21st, 2012.
I photographed her PINK baby blanket that she slept with forever, and her baby shoes they had bronzed to keep. I also photographed the necklaces they wear around their neck to remind them of their baby girl. Mom's says: Mini Me, Dad's says: Daddy's girl, and her Big Sisters says: Little Sis. Chantelle had her daughters ashes put into a ring that was heart shaped, she wears it everyday….Her daddy and Big Sissy wear bracelets that says "Got love for Mackenzie" that they had made when the accident first happened. Mercedes had her sisters nick-name tattoo'd on her hand "TT," that was done to remind herself her baby sister is not far. Last but not least I was able to capture Chantelle's arm that she had tattooed. The Mothers Day before Mackenzie's accident she gave her mom a card that said…"Mom I love you. U are the best mom in the world. I love you so much. Love T <3 T <3." Chantelle has that tattooed on her arm in her daughters handwriting from that same card.
13 and not letting Loeys-Dietz syndrome get in her way.
Meet Giana Eleonora.
Loeys-Dietz syndrome is a connective tissue disease.spontaneous gene mutation " her children however will have a 50/50 chance of inheriting LDS. The condition affect all/most of the connective tissue in your body. It leaves the connective tissue to lax or "stretchy." ( she's super double jointed) Spine and dilated and sometimes "cork screw" arteries being the main focus. She was in the 1st grade when she was diagnosed. She has eight surgeries since then. Her two biggest surgeries thus far were on her spine. Last year they completely fused her entire spine. She has to take meds for her heart. She has a dilated aorta which she takes beta blockers to slow down her blood pressure which then reduces the blood flow threw the aorta at one time to slow down the stretching of the aorta. This is just how Loeys-Dietz has effected Giana. It affect each person different. She is consider to be mild but her children could be more extreme then her. There is so much more to be learned about then condition cause it is so newly found. 2005 and in 2007 only 140 people were reported to have LDS. For the most part Giana is an everyday teenager. She is beautiful and extremely helpful with her two baby sisters.
A total bad ass!
She fought, & she won! Meet 29 year old cancer survivor. She had a bilateral mastectomy, 16 rounds of chemo, 33 rounds of radiation and SHE BEAT CANCER! Megan has been an inspiration to all young women out there and it has been a PLEASURE documenting her journey!! CHEERS to you girl!!
Little sweetness, Meet Henry
Henry is 3 years old and was just diagnosed with Autism this year. Autism, also known as Autism spectrum disorder or ASD is a developmental disorder that appears in the first 3 years of life, and affects the brain's normal development of social and communication skills. From looking at this sweet kid you would never know which is often difficult for the parents because someone from the out side looking in doesn't always understand his condition. He for the most part is an everyday kid and loves to have fun just like you and I. He is in a special class that allows him to have one on one time with a teacher. Henry is a wonderful big brother and does his best to face this challenges ahead of him. Autism is much harder on a child when they are older and more socially involved. We all would like more funding and research to go to finding a way to truly maintain this diagnoses. 1 in 88 children are diagnosed with this disorder. Males are four times more likely to have an ASD than females
A REAL LIFE MIRACLE
Mom says, "For this child I prayed, and the Lord has granted me my petition which I asked of Him.” – 1 Samuel 1:27
My husband and I had always talked about adopting, even before we were married. We thought we would adopt after we had a few biological children. Little did we know that adoption was part of God’s plan for our family all along… After a couple of years of trying we found out that we would not be able to get pregnant on our own. We knew right away that we wanted to pursue adoption, since it was something we had already planned on. As we were just starting our adoption journey, we learned about embryo adoption. Through this type of adoption, we would have the opportunity to adopt frozen embryos from a family who had completed their family through fertility treatments and had remaining embryos. We could potentially be pregnant with, carry and deliver our adopted children. We both knew right away that God was calling us to embryo adoption to give these tiny frozen babies a chance to be born, and He met all of our needs along the journey. We were matched with a family and adopted their 8 remaining embryos. After our second embryo transfer last September, we were overjoyed when we got our test results to find out that we were pregnant! After 4 years of waiting and praying for a child, we were blessed on May 3rd by the birth of our son Eli Davis (5 weeks early, by the way). He is the most amazing miracle and captured our hearts from the moment we met him. We feel honored and humbled that of all the families out there, God chose us to be Eli’s parents. We are beyond blessed!!"
She's a walking miracle.
Meet 16 year old Maddi
Maddi has always been known for her athletic ability and competitive nature. Her sport of choice is soccer, but she has always accepted any challenge. January 5th Maddi faced the largest challenge she had ever been presented with...a traumatic brain injury that almost claimed her life. With God's blessing, thousands of prayers, an amazing medical team and her own strong will Maddi fought her way back home on March 28th. A craniotomy was initially performed to remove a portion of her skull. Mid-April a cranioplasty (replacement of her skull) was completed and Maddi returned home, once again, victorious. Today, Maddi continues a daily fight to relearn and regain her previous abilities. She does so with the same spirit she's known for on the soccer field. Maddi has claimed her injury with pride. She is a survivor and ready to overcome all obstacles with her grateful heart and beautiful smile. "Go, Maddi, go."
Meet Janet & Baby Bear Brandon
"In 2011 we were so blessed to find out that we were going to have a baby boy. We had so much fun preparing for his arrival that all of his clothes were sorted and ready and his nursery was almost finished. Sadly, at 22 weeks we experienced Preterm premature rupture of membranes ( pPROM ) with our son Brandon Ty Garner. Janet was admitted to hospital and put on strict bed rest to hold out as long as possible with little to no fluid. Two weeks later he was born at 24 weeks. He weighed 1lb 12oz and measured 12.5 inches long. We were blessed to have him with us for 6 hours before he returned home to Heaven. After a devastating year and the help of multiple support groups we found hope. Janet was diagnosed with an incompetent cervix (IC) and we found out about the Transabdominal cerclage ( TAC ) which was our best chance for having another child. In 2013 we were blessed with our healthy baby girl Belle Hope Garner. We never gave up!" - Ty Garner (Brandon's Daddy)
For more information on pProm, IC and TAC please go to the following link beyondthisdesert.com
TALK ABOUT A FIGHTER...CHECK OUT MY SWEET CLIENT RAELEEN. Not only is she gorgeous but SO incredibly brave.
She has battled leukemia not once, not twice... but THREE times now and needs our prayers.
Raeleen says, "I was first diagnosed with acute lymphoblastic leukemia in January 2007, at the age of 16. Despite the 2 1/2 year chemotherapy treatment plan, I graduated on time and continued on to college! I have always wanted to be a nurse and I let my experience fuel my motivation to get through school. The day I was to begin my 3rd year of college, in September 2010, I found out my leukemia returned. I started a two year course of chemotherapy treatment and took some time off of school. As I was finishing up treatment in 2012, I was able to return to school to continue completing my per-requisites for nursing. This past spring, I was officially accepted into California Baptist University's School of Nursing! This past month, the leukemia has returned for the 3rd time. I will need a bone marrow transplant. I am currently undergoing chemotherapy and Children's Hospital Los Angeles, but I will be transferred to City of Hope for my transplant. I won't be discouraged. I know if I can do this twice, I can do it again.. And again if I need to! I have plans, dreams, and goals for my life, and I'm going to fight as hard as I can to keep cancer from taking them away. CBU School of Nursing is holding my spot, and I look forward to the day that I can return to school, and one day take care of patients like myself!"
Beautiful and CANCER FREE
In life you are faced with challenges and in 2013 my family personally was faced with one. During the 7th month of my pregnancy my mother was diagnosed with breast cancer. A double mastectomy later followed by an organic diet she is CANCER FREE. It was a tough road for my family, especially my Step Dad and of course my mother but she is one of the strongest people I know, and she was NOT going to let this cancer get the best of her. GORGEOUS and healed. We did a session to celebrate LIFE!
The depth of a mother's love.
Grab your boxing gloves because we together are going to help HER kill cancer!! Often I am asked why I do what I do and what makes me different then other photographers. Well I like to think, it's the person on the other end of the lens. My job is to showcase something you may never even knew was there. I try my very best to show my clients "real life" because you and I both know that everything isn't always perfect so why fake it and act as if tragedy doesn't exist. At times we act as if it doesn't happen. It is my job to find the good in every session I take on. I have made it my personal task to make my clients feel loved right where they are at regardless of what they are going through. I will admit some "Forever Loved" sessions are harder then others but this my friends has personally been the most compelling to me out of the hundreds I have shot. Meet Sweet 24 year old Ashley who is about to be a mama of 2. Quiencidently 7 people that I have never met went to my website and applied for a "forever loved" session on behalf of Ashley. It wasn't until the 8th person that contacted me about "Ashley" that I realized this girl and I had already spoken many months ago only then her situation was a bit different.
One day Ashley's knee was hurting and extremely swollen, she was also 10 weeks pregnant. She went to the doctors multiple times and was told she has arthritis. In December 2014 Ashley struggled with the ever increasing knee pain, nausea and loss of appetite. By this time, it was extremely difficult to walk and she could no longer straighten her knee. Work was becoming more challenging every day. Thankfully, she did finally get to see an orthopedist. The ortho reviewed x-rays that had been taken in November and informed Ashley that there was a 3 cm. tumor in the distal end of her femur (bottom of the thigh bone), and that more tests were needed. In January 2014, before the MRI could be authorized, Ashley ended up in the ER because she had numbness in her foot. An x-ray at that time revealed that she had a large tumor, measuring over 10 cm. Ashley had cancer. A hurricane of questions, concerns, phone calls, and frustrations started. Being 24 with bone cancer is bad enough... but to be pregnant, too!?? It was all so unbelievable. Ashley had the surgery to remove the lower half of her femur and replace it with an "fancy" knee replacement on February 25, 2014. Ashley opt out of chemo for the safety of her baby girl, there was a great possibility it would have killed her. Last month Ashley was experiencing terrible headaches and considering she was pregnant, her first thought was the headaches were pregnancy related. One morning she woke up and her tongue on her left side was totally numb. Ashley then went to her ER and found out the cancer had spread to her skull. They told her 2 weeks ago there was no cure, and that surgery was far to risky because the cancer is to close to her brain stem. They also told Ashley the devastating news...she has one year at "best" to live. They are delivering sweet Paisley in 2 weeks so Ashley can get started on her chemo. They believe this will "buy her time" and allow her to bond with her family as one. At this time Ashley's spirits are positive, she believe it's in Gods hands. She wants her 6 year old son and daughter to have their mom around and but she understands there is a great possibility that will not be the case. Therefor she wants them to always feel loved and remember how much she loved them.
Her story shows you the depth of a mother's love. The things we are willing to do for our child to give them life. I can't wait to meet this sweet baby, it is unbelievable how many already are in love with her.
I AM ONLY 4
I would like to you meet an amazing, not so typical 4 year old, Aydain. First, allow me to set the stage and tell you that this little man was giving me a run for my money during our photo session. I was very clear that on that day, he was the boss. His Mom and Dad have told me that he totally set in his ways, always has been and they don't expect cancer to change that. Over Christmas break 2013 a violent strain of the flu had been going around and his entire family had been sick. Aydain went to Urgent Care twice because he was the only member of his family who was not healing. Christmas morning, he laid in bed and had no interest, whatsoever, in opening his presents. On January 2nd 2014 Aydain was brought to the ER when his mother found something sticking out from his neck. This would just happen to be a very small protrusion of a very large tumor extending from his chest all the way through to his neck pushing on his lungs.
Shortly after getting these results Aydain was rushed from the emergency room to Rady Children’s Hospital in San Diego. This hospital has quickly become this families second home. Aydain and his family have spent more time in the hospital this year then anywhere else. Aydain’s diagnosis was Neuroblastoma.
Neuroblastoma is the most horrible of all pediatric cancers. Neuroblastoma generates from nerve tissue and is a solid tumor cancer and it spreads rapidly in soft tissue and bone marrow. It is most common in babies and toddlers. Aydain has had too many blood transfusions and platelet transfusions to count. He has had over 10 surgeries, 2 ports, collapsed lungs, 5 rounds of chemotherapy, 1 month of radiation, stem cell resection and stem cell therapy, and is beginning 6 months of immunotherapy this Sunday. Statistics say that the highest survival rate for cases like Aydain are no higher than 25 % to 30%. This brave family was recently told that Aydain still has 10% of the disease in his bone marrow after initial testings showed that it was in remission. Aydain also has high frequency hearing loss and as of now the family is unsure of just how much is gone until another test is completed. Throughout all of this, he has remained the silly, loving, funny, brave boy he has always been. Christie, Aydains Mother, said that she “truly feels he was put here on Earth to help and inspire others and he is doing just that." Aydain your name means "little ball of fire" and you, my new friend, have lived up to that name. Thank you for allowing me into your little world and I know that you are going to accomplish GREAT things.
I am only 2
Please read, share and pray for this little boy.
Meet sweet, Maximus Barone. Born on November 13th, 2012, Maximus just celebrated his 2nd birthday spending the day at Disneyland with his family. This was everyone’s first time experiencing the fun of Disney and they enjoyed all of it!
Sarah, Max’s Mother, said her pregnancy was perfect. He was born on a chilly November morning in Maryland but it was described as beautiful. Aside from some minor blood gas issues, he was a perfect 8-pound boy! The youngest of 4 children, Max has always brought so much joy to everyone who meets him. From his deep blue eyes and infectious giggle, to his love of singing and adorable sense of humor. Max is truly a blessing to his entire family. Max met all of his milestones on time and was developing as he should. In early September 2014, Max began having some minor issues with his balance. He was stumbling more often while also struggling with frequent vomiting. He was admitted to Rady's Children's Hospital in San Diego for a 3 day observation. After an MRI, lumbar puncture, many blood draws and a variety of skin tests, it was discovered that there was an abnormality in the right frontal lobe of his brain. These findings, along with the results of his EEG, Max was diagnosed with a seizure disorder to which he was prescribed a medication and sent home. His seizure frequency and vomiting increased in coming weeks. While most of his seizures were on a smaller scale, he then began to have some Grand Mal seizures.These types of seizures are very big and extremely dangerous. Max seemed to become increasingly tired and more fatigued than usual. Growing concern led to many visits with Neurologists and Geneticists from San Diego to UCLA. Sarah would consult via phone with medical professionals across the United States and even some throughout parts of the UK.
After several weeks, their family was given the most devastating of news. Max has a terribly, rare disease called Late Infantile Batten disease, or LIBD. This disease is an inherited genetic disorder, causing a build up of lipopigment in the tissue of the brain. A very rare and terminal disease.
Batten disease is a form of fetal inherited disorder that affects a person's nervous system. It starts during childhood and in some cases the signs are rather subtle, taking on the form of behavioral and personality changes, as well as clumsiness, slow learning, or stumbling. The symptoms presented by Batten disease are connected to a buildup of substances known as, 'lipopigments,' in the person's bodily tissues. Lipopigments are comprised of fats and proteins. Vision loss is an early sign of Batten disease and can be an indicator that is caught during an eye examination. (web MD)
After doing further research on the Batten Disease, Sarah was tested for the gene and found out that she and Max’s father were both carriers.
It is possible to have children without this disease but it is also possible to give birth to a child that will get it. This is not a normal test that is performed or required for a pregnancy which made what Sarah heard, all the more difficult to understand. Batten Disease is horrible to witness, but absolutely horrendous to endure. Max will most likely begin to exhibit more clumsiness as he loses motor skills, more frequent seizures, a loss of eyesight, poor muscle tone, and eventually he will lose the ability to walk talk sit and stand. There is no way to define how quickly these symptoms will start to show but through reading all happen very rapidly. There are no words to describe what Max and his family are to endure. The life expectancy for Max is between 8 and 10 years old and Sarah plans on making each day as memorable as possible for him. Medical science has not yet discovered a specific treatment that will either stop of reverse the symptoms of Batten disease at this time. (www.disabled-world.com)
Will he ever begin to speak in full sentences? Attend Kindergarten? Play a sport? This deterioration of his body can happen at any given time and daily they are grappling with this eventually happening.
To know what his future holds and what he will never be able to do or experience is so unbelievably painful for this family. Help me raise awareness and bring light to something many know little about. Let's all look into this disease and see what can be done for more research, we must find a cure! Max along with thousands of others deserve to have a life long lived and not have to endure this tragic pain. Max will continue to be in my thoughts, and I will update you all on his progress in a few months. Please pray for this family and the daily trails they face.
Sarah told me yesterday, "Has anyone ever told you that you have this gift, this amazing way of making the people you meet and photograph, feel as if they, have know you forever?? I instantly felt comfortable to share with you our pain and our struggles. The magic you can create of my son will be irreplaceable. These pictures, and Having Lindsey photograph my son on his 2nd birthday, will allow us to hold onto the memories of Maximus without any of the negative effects of this monster, Batten, Disease."
You will be missed sweet baby girl
I often ask God "why" and question life. I question things like cancer, tragic accidents, and murders, stillborns, child deaths... everything that just seems so painful for someone to bear. I know death is never easy but I believe everyone should die of old age, I know that's not reality. As a mother the last phone call/email I want to get for a "forever loved" session is anything that has to do with a child. Friday afternoon as I was preparing for my weekend sessions with all 3 of my girls I got an email from a girl named Kelly telling me her sweet friend just found out her baby had died. She told me some details and asked if I would contact the family to be there in their time of need. Given the circumstances, you only have a very short window to truly capture these forever moments. I rushed out of the store I was in and called this woman. When this mother answered the phone she could barley speak. She knew I was calling which I'm sure was the only reason why she answered the phone. She was short of breath, crying uncontrollably between her words and could barely even speak. She told me that earlier that morning she was eating breakfast, oatmeal actually. She had a cup of coffee and was proceeding with her usual routine. Her husband had already left for work and she was just at home relaxing with her son and niece. She noticed that her daughter hadn't been moving in her belly like usual. Normally it is her baby’s routine to have some fun in mom's belly once she drinks her coffee. Considering that her baby hadn't kicked all morning, mom moved her tummy a bit and after still feeling nothing went and got her heart monitor to check on her. Again mom heard nothing. In a panic she called her husband and told him what was going on and said she was going to drop the kids off to be watched and head to the hospital. Once she got to the hospital they got her in a room to be monitored, and the nurse could not find a heartbeat. They then gave her an ultrasound and discovered her sweet baby had died due to the umbilical cord being wrapped around her child's neck. They asked her if she would like to delivery the baby vaginally or said she could have a C-section. Given the fact mom had ate that morning she needed to come back for the surgery, she wanted the C-section. She was told she could come at 3:30pm later that afternoon or 5:00am the following morning. Mom decided to come back given she was alone and wanted the support of her husband who was working over two hours away. She would of had to do the surgery alone if she decided to do it that day because it was impossible for him to be there by 3:30pm. Mom, a total wreck left the hospital in disbelief. How was this happening? Her baby was just moving and alive late the evening before so how... why... why her? Why her baby? Why their child? Every question known to man popped into her mind- nothing made sense.
I met the family at 6:30am Saturday morning. I am a professional but human. Set aside my everyday photography, I photograph about 15 to 20 terminal sessions a month that range from every tragedy under the sun BUT that NEVER makes these easy. Every session I do affects me differently. I walked into a cold hospital room, room 230- full of tears and family, everyone was in disbelief. I grabbed mom's hand and I told her this was quite literally the worst thing that could ever happen to a mother but together we were going to get through this. I smiled at their nurse sweet Ronda, looked at dad and told him I was here to help them both. I also told them that there was NO right way to handle this. If they wanted to freak out on me, throw something, cry, yell...whatever, it was absolutely OK. Thankfully I know many of the nurses and doctors at the hospital Mom was delivering at so I called Friday night and told them I'd be there in the morning. When I got there they gave mom the option of having me in the OR during the C-section. Mom and Dad decided that was right where I needed to be, although both were very scared and nervous. I went into the bathroom before we walked into the OR, said a prayer for the surgery and for everything that was about to transpire. I then got all geared up, and together Dad and I met mom in the OR where surgery had already started. I looked at mom on the operating table, she knew my heart was breaking for her. With my hair and mouth covered, and only my eyes to be seen Mom and Dad both knew I was doing everything I could to be supportive and hold it together for them. I needed to be strong; I needed to do my job. At 7:52am I looked at that clock and sweet baby Monroe Faith Staley was born. I was the first to see her. My eyes quickly filled with tears as I pulled my mask down, looked over to mom and dad and said, "SHE IS PERFECT." Together we all cried. I stood next to the baby and watched the nurses give Monroe her first sponge bath, I touched her hands, put the hat I brought her on and took a few pictures. The nurse Miguel which we all adore then handed mom her baby girl as the doctor finished her surgery. It was a dream, this family was living a total nightmare. I can’t even begin to describe the pain I knew Mom and Dad were feeling at that moment. As mom pleaded for her baby to wake up, her sweet husband brushed her hair with his hands crying with her. Cheek to cheek, clinging to their baby girl in disbelief; the two of them were pillars for each other. At 8:20am the four of us went across the hall to Mom's room and for almost 9 hours Monroe never left their sight. I was able to capture moments that this family will forever have. I kissed this sweet baby over and over again... I even joked with Mom about taking her home. We both got a giggle out of it. Baby was full term and ABSOLUTE PERFECTION, Monroe defined perfection. Throughout the morning and afternoon family members came to meet this perfect angel. I took the baby to the infant warmer and snapped away. Any image that came to mind, I shot. I wanted this family to have every possible memory of this child I could physically give them. So with that being said, I would like you all to meet this beautiful family. 26 year old Mother Emily, 29 year old Father Richard, and baby girl Monroe Faith Staley weighing 6 pounds 2.5 ounces, 19 inches long.
This family wants you all to know they have felt your prayers. To those of you that responded to my post when I asked for prayer Friday evening, they appreciate the kindness you have shown to them. Sweet Monroe has a 5 year old big brother that loved her dearly and was counting down the days until he could finally meet his baby sister. This death was EXTREMELY unexpected and tragic. I am asking you all for your prayers. Emily will be released from the hospital today and have to go home to a house full of baby items. She will have to walk into her daughter’s nursery and relive this nightmare for the rest of her life. Please stop and pray for them. I said on Friday, "No matter what anybody says about grief and about time healing all wounds, the truth is, there are certain sorrows that never fade away until the heart stops beating and the last breath is taken." And I ment that. NO FAMILY deserves this unbearable pain. The Staley's rest assured knowing they will be reunited with their sweet baby girl one day soon, but until that day comes they struggle thinking life will ever have some normalcy. They would like their story to be shared; they hope to bring comfort to other families out there that have also experienced such tragedy.
Precious in HIS sight
I would like you all to meet the sweet, 8 pound, 3 and a half month old, Carly. Carly was born July 22, 2014. Her mother Suzie had a normal pregnancy and went in for an AFP test. An AFP test is an alpha-fetoprotein blood test which tests for things such as Spina- Bifida, Anencephaly and can also be used for Trisomy conditions.
Suzie, a Mother of 3, opted for an AFP screening while she was between 18-20 weeks into her pregnancy because it came with an early ultrasound and she wanted to know the sex of the baby sooner. She was expecting baby number 4! Typically for someone her age (28 at the time) they would expect the risk assessment to be something like 1:1700 (1 in 1700). Anything-below 1:200 (1 in 200) and they would really push for additional testing. Suzie’s test came back and was 1:6 (1 in 6). So when the results indicated that there may be a Trisomy condition (more commonly referred to as Down Syndrome or Edwards Syndrome) Suzie and her Husband opted for the additional testing. The couple did not request additional testing for abortive purposes, but to be better prepared in the incidence of a positive. Regardless of the diagnoses abortion was never an option for this couple.
During the pregnancy Suzie explained to me that she had ultra sound, after ultra sound. Numerous testing and doctors visits. She never knew what her baby was going to look like. In these appointments they have a tendency to point out everything wrong with the child, and don’t often speak of any good.
The journey of this pregnancy was extremely different than all of her others. Sweet Carly was born and like many Mothers, Suzie cried with joy. She also cried looking at her baby because she looked like her perfect newborn. She had 10 fingers, 10 toes, two eyes and adorable lips. Suzie and her husband, had no idea what to expect with her delivery because of all the negativity and caution they were subjected to during her pregnancy.
Carly’s diagnoses: Congenital Heart Disease- 1 very large inlet Ventral Septal Defect (VSD), 2 smaller Atrial Septal Defects (ASD's), (all holes in her heart), Hypoplastic left ventricle, Hypoplastic aortic arch, Sandifer syndrome, Trisomy 21 (Down syndrome), Failure to Thrive and Hypothyroidism. What a diagnosis for such a perfect, tiny Angel.
A hole in the septum between the heart's two upper chambers is called an Atrial Septal Defect (ASD). A hole in the septum between the heart's two lower chambers is called a Ventricular Septal Defect (VSD). Carly has both of these. The septum prevents mixing of blood between the two sides of the heart. In a lot of cases, smaller holes will even grow to close on their own. Carly’s case is extreme and the holes are so large and in such a location that blood flow is passing back and forth between the chambers and she is in complete heart failure.
Because the risk of heart issues in children with Down syndrome is around 50%, their early diagnosis afforded us a lot of additional heart screenings. They discovered the Large VSD while she was still in utero with a Fetal Echocardiogram. They were also able to have a team of Cardiac Doctors and Surgeons available for her birth. Suzie and her husband had the chance to choose a hospital that was further away, but with a better NICU. They also knew that they were going to need to start her on heart medications right away. Suzie’s birthing process went so smoothly and instead of needing immediate surgery, they were able to postpone it for the last 3 and a half months!
When Carly was just 1 month old, she started having what looked like mini-seizures. Her brain activity was normal, but they persisted. She started having complete Cyanotic episodes. Suzie found her in her cradle, blue after she started making a coughing/choking noise, but she quickly regained color after Suzie picked her up. Carly’s parents talked to the doctor and they said to expect a slight blue shade in Carly, due to her heart condition, but if she had another episode they would need to go in and have her seen. Unfortunately, this event happened again so Carly was admitted. She was in the hospital for 1 week when they determined that her acid reflux was a more severe form called Sandifer Syndrome. This condition affects 1% of cases of GERD. She would be in so much pain, that it would put so much additional stress on her heart that she would essentially forget to breathe. The Sandifer Syndrome was the underlying cause of the seizure like activity.
It was also noted at that time, that Carly’s heart was rapidly getting worse. This left the Doctor’s with only one resolve and that was to increase her heart medication. Carly’s heart was deteriorating quickly.
The doctors wanted to perform the necessary surgery, but wanted Carly to gain a little weight first. This would also enable them with precious time to get her reflux under control. The reflux would have made her recovery process worse. The Doctor’s decided to take an aggressive approach in treating her reflux, so they paired two medications together.
Today is a huge day for baby Carly! It’s SURGERY day! As a matter of fact she is in surgery right now!! Open-heart surgery is expected to be 5 to 8 hours long. She is still considered Failure to Thrive and, because of all of this, a difficult recovery is to be expected.
I am asking you all for your prayers today. Carly is in need of this surgery to be successful in order for her to have a chance at living the beautiful life she was meant for. Carly’s family is hopeful and praying for a positive outcome. Sweet Carly has two older sisters and a big brother also praying for her surgery today.
I also would like to add that I believe we need to change the stigma of Down Syndrome and raise awareness toward the condition! They’re just rockin’ an extra chromosome and I think they rock it well! We should be coming together for more research into what makes these beautiful children unique.
Suzie told me this morning heading into surgery, "You are truly an amazing spirit and our family is so grateful for the pictures. Years from now when she's all better, I look forward to being able to show her them."