Children’s Miracle Network
Northern New York’s only Children’s Miracle Network Hospital.
Samaritan Medical Center has served as the North Country’s official Children’s Miracle Network Hospital since 1990, striving to raise and allocate funds to improve the health and wellbeing of children in Jefferson, Lewis and St. Lawrence counties.
Funds raised through the Children’s Miracle Network program support child-centered areas of Samaritan through the funding of capital projects and purchase of critical pediatric equipment. In addition, funds raised provide financial assistance to local families with a child facing a medical crisis for travel expenses and other out-of-pocket medical costs — a program unique to Samaritan.
Direct Family Assistance Program
The Direct Family Assistance Program provides financial assistance for expenses related to a child’s serious medical condition. This may include travel expenses, un-insured portions of medical and pharmaceutical bills, un-insured equipment, co-pays and out of pocket costs. To be eligible, children must reside in Jefferson, Lewis or St. Lawrence County. The age limit is 18 or up to 21 if the child is still a dependent or in college.
Our Miracles in the Making
Sophia, Traumatic Brain Injury Close
When Sophia O’Connor was just three years old, she suffered an adverse reaction to a prescribed medication. This reaction occurred in the middle of the night and caused Sophia to have hypoglycemia, or very low blood sugar. Because she was still in bed and her family was asleep, the hypoglycemia lasted for several hours and resulted in Sophia having multiple seizures and led to irreversible injury to her brain.
When Sophia wouldn’t wake up in the morning, her family called 911 and she was rushed to the nearest hospital. Due to the severity of her condition, she was airlifted to another hospital where a specialized medical team was ready and waiting for her arrival. She was admitted to the pediatric intensive care unit and her family was told that she was the sickest patient there. During just the first half of her first day in the hospital, Sophia had over 150 seizures. The seizures appear to have occurred in the area of her brain that controls vision and resulted in blindness.
Sophia is now six years old and is in first grade. She still has seizures daily, but recently has started talking more and in longer sentences, and is always using her imagination. She’s kind, thoughtful and loves her friends and family. She has a strong support system that helps her enjoy each day and continue to accomplish new things.
Children’s Miracle Network at Samaritan Medical Center has helped Sophia and her family through the Direct Family Assistance Program. She receives regular care from specialists outside her hometown, which means lots of travel. CMN provides reimbursement of travel expenses, including mileage, food and lodging.
Through all that has happened, hope has remained a constant for Sophia’s family. There are days her parents grieve the life she once had and what they thought the future would be for her. Even through the challenges, they remain positive. They are thankful to watch their sweet and spunky Sophia grow, learn and conquer new things.
Leah, Congenital Cytomegalovirus Close
When I was pregnant with Leah, at her 20 week anatomy scan I knew something was wrong. The sonographer had a look on her face that I will never forget but she couldn’t tell me around was wrong. The doctor called later to let me know Leah had fluid around her heart, fluid collecting in her abdomen, her liver was enlarged, and she was extremely small for her gestational age.
We were able to get into a perinatal medicine doctor in Rochester and they ran several tests to determine what was wrong. The result was congenital cytomegalovirus and there was no way to predict how severely the virus would affect Leah if she survived. Cytomegalovirus can cause brain damage, hearing loss, visual impairments, and motor delays.
We traveled back and forth to Rochester for sonograms and to discuss treatment options. The doctors in Rochester put me on an antiviral medication, but I had learned about an infusion treatment while researching options and hoped it would help save Leah. We traveled to The Fetal Center in Houston, Texas when I was 25 weeks pregnant and I was able to receive two infusions (one at 27 weeks and one at 31 weeks) and be monitored by the doctors in Texas before Leah was born. I delivered her in Texas as well. She was taken immediately to the NICU for assessment and spent 11 days there. After she was discharged from the NICU we stayed in Texas for two more weeks for follow up appointments. The doctors in Texas were happily surprised by how well she was doing and we were able to make the trip back to our home in New York.
Leah’s initial care team was made up of several specialists and required many trips to Syracuse and Rochester for the first few years of her life. Leah was also born with profound hearing loss as a result of the cytomegalovirus. She has had two cochlear implant surgeries. She needed to use hearing aids prior to being able to have cochlear implant surgery. When our insurance would not cover any of the cost for her hearing aids, Children’s Miracle Network was there to help. Children’s Miracle Network has also helped support us with the expense of mileage to and from her appointments. Leah receives auditory verbal therapy and play therapy to support her language and social development. Children’s Miracle Network helps us with copays and added expenses that are necessary to support Leah’s hearing, language, cognition, social skills and overall wellbeing. We could not be more grateful for the continued support of Children’s Miracle Network.
Viggo, Trisomy 21 Close
Viggo had a prenatal diagnosis of Trisomy 21 (the most common form of Down syndrome). At ten hours old, he was diagnosed with imperforate anus/anorectal-malformation, and underwent surgery for testicular torsion. At 48 hours old, he underwent surgery for a colostomy.
When Viggo was three months old, he was diagnosed with laryngomalacia (soft larynx) and tracheomalacia (collapse of the trachea) and was placed on oxygen 24/7. A sleep study confirmed obstructive and central sleep apnea. He’s been using a BiPap machine to help him breathe at night ever since. A swallow study confirmed dysphagia, and all of his liquids must be thickened to prevent aspiration and pneumonia, which could easily prove fatal with his respiratory sicknesses. Another surgery when he was five months old created his anus, and four months later he had surgery to close his colostomy.
After months of battling chronic constipation and severe skin breakdown, we sought the help of a colorectal specialists in Washington, D.C., where he had a revision surgery to correctly place his anus within his sphincter. We also traveled several hours from home to flush his colon daily. He’s been to Washington, D.C. three times to complete testing, surgery and check his recovery. He’ll go once a year for the rest of his life to manage his condition.
A recent visit to the orthopedist showed severe ankle pronation and hip displaysia. He now wears braces for his ankles and will undergo at least two surgeries for his hips. Nevertheless, he is determined to walk and is taking more steps every day!
Children’s Miracle Network has helped us since the first day, ensuring his father could travel to the NICU in Syracuse to visit and still earn a living here in Watertown. Traveling 500 miles to see the specialist who changed Viggo’s life seemed unreachable, but CMN made it happen, and Viggo is doing wonderfully! Oxygen supplies, flush supplies, orthopedic supplies…all the small expenses add up quickly but CMN always makes sure we’re able to get them to care for Viggo and give him his best, happiest life.
Katherine, Complex Regional Pain Syndrome (CRPS) Close
My name is Katherine MacGregor and I am 18 years old. I have a rare, chronic disease known as complex regional pain syndrome, or CRPS. CRPS affects nerves from complications of surgery or an injury that never healed correctly.
For me, I had an injury in 2014 from dance, and it didn’t heal the way it was supposed to. Gradually the pain got worse instead of better. I was taken back to the doctor for more x-rays and MRI’s but nothing was showing up. I became hyper-sensitive to touch, and the pain moved from my ankle up my leg. The pain feels hot as fire but to the touch is cold as ice. At one point I was in a wheelchair and lost the ability to walk and the strength in my arms. I wasn’t able to participate in activities at school and lost many friends.
Even at age 14 I still knew my body was not feeling right and that it was not just in my head. It hurt me deeply when others did not believe me about my pain and agony. I closed myself in this tight little private bubble, and enclosed my feelings and emotions. I was not receiving any help for all the pain I was in. But being so young made it that much harder to speak up and stand up for myself.
I saw a new doctor who first ruled out different types of cancer. I thought, “What could be worse than cancer?” Then he told me I had CRPS. He gave me and my parents the rundown on what it is, how I got it, and what the symptoms are. He said that not a lot of doctors know about CRPS because it is so rare and that is why I didn’t receive the help that I needed. Then he told us about care and treatment options.
With therapy and treatment, my pain level was reduced from a 7 to a 5, which was good for me. As my strength improved and pain decreased, I was able to return to school for a couple hours at a time. Counseling became vital to learning how to deal with my feelings about this lifelong illness. I also attended a 4-week program at Children’s Hospital of Philadelphia that included physical, occupational, music and art therapy each day. The program helped to retrain my brain for functional daily living with chronic pain.I now have a service dog, Finnegan. Children’s Miracle Network paid for Finnegan’s training and he has become a vital part of my daily routine at home. He sits next to me on the couch when I am having pseudo-seizure, or when I am simply in pain. Finnegan has not only helped me but my father as well. My father developed PTSD from military deployments to Afghanistan, Iraq and Somalia and having Finnegan has aided in his recovery, too.
CMN has been a large part throughout my healing process, helping with Finnegan and staying in touch with me and my progress. I am so grateful for them.
Olivia, Tracheomalacia Close
Olivia Rose Gorman was born a healthy little girl on September 12, 2015 at Samaritan Medical Center. We were discharged and two days later our life turned upside down. We went to her newborn check-up and everything was fine until her oxygen level dropped during her appointment and she became unresponsive. In a blink of an eye all I can remember is sitting in the back of the ambulance heading to Syracuse to the children’s hospital. From that moment on her medical life has been a roller coaster.
After multiple tests, CT scans, MRI’s, and Bronchoscopies, Olivia was diagnosed with a rare heart condition called right aortic arch with aberrant left subclavian. After being in the hospital the first two weeks of her life, we saw a pediatric cardiologist at Upstate Hospital and a pediatric ENT and from there on we would go to quarterly appointments to get Olivia checked out. After receiving the news about Olivia‘s rare heart conditions, we did not know where life would take us or how her life would be. We just took it day by day.
In June 2017, Olivia had her first open heart surgery at Upstate hospital by Dr. George Alfieris from Rochester. Her surgery went great, she was healing beautifully and her scar was barely noticeable. In the fall of 2017, my husband, her father, deployed to Korea and the children and I move back home for a few months to Pennsylvania and that is where she started to get sick a lot more again. She had a lot of hospital stays and ended up having another surgery there. She was being seen by the Children’s Hospital of Pennsylvania, and they determined that she had a restrictive airway, or in doctor’s terms it’s called tracheomalacia.
Olivia has severe asthma. She takes daily inhalers and nebulizer treatments and steroids. She is only seven years old and she cannot live a normal seven year old life. She has restrictions on going outside if it’s above 80° or below 40° and living in Upstate New York State that is very hard for her during the winter time. The smallest cold symptoms to someone normal turns into something worse for her, and she’s now had many cases of pneumonia, bronchitis and croup. I lost count on how many times Olivia has been sick, hospitalized or had to have surgery for something.
Here we are now in 2023, still fighting for her. She recently had another surgery in July where her doctors at Upstate recommended she be seen by a pediatric airway specialist in Cincinnati, Ohio. Essentially, they would do another major surgery where they would put a stent in her airway to open it up. Right now, every time she is sick, her lungs are getting worse. We are still struggling with insurance to cover her to be seen out of state. We are so lucky to be involved and get help from the Children’s Miracle Network with guidance and support.
Despite everything Olivia has been through, she still smiles, loves to sing and make art. We are so blessed to have her in our life.
The Gorman Family
Josiah, Rare Disease: Familial Cold Autoinflammatory Syndrome (NLRP3 gene mutation) Close
Josiah J. Cabrera was born three weeks early due to fetal unstable tachycardia (his heart rate was between 190-300+) and my severe health complications during pregnancy. He had to be placed in the NICU for jaundice and heart monitoring, and three days later we were ready to go home. I knew there was something wrong with our baby. He cried all the time and had severely low muscle tone.
When he was 11 days old, Josiah was rushed by ambulance for his first seizure. I was devastated but blessed that he was in great hands. We found out that he had three different infections, plus protein and glucose in his cerebral spinal fluid. After antibiotics, a lot of imaging, and 13 days in the hospital we were ready to go home. I thought the medical stuff was OVER. I was wrong.
Josiah was very developmentally delayed since eight weeks old. He also started showing puzzling symptoms: facial rashes, extreme joint pain, high fevers, swollen lymph nodes, sensitively to weather, and body color changes.
After documenting in a “symptom diary” for 12 months, we were referred to ten different specialists. He was misdiagnosed five times before getting genetic testing done. Finally after 669 days we had our diagnosis, Familial Cold Auto-inflammatory Syndrome (FCAS) with a subset of Raynaud’s disease.
In 2022, the CDC reported that FCAS was only found in 300 people world-wide and it was classified as a rare disease. The only way people are diagnosed is through genetic testing. Josiah is one out of four people in the whole world who has a rare deletion mutation of the NLRP3 gene which causes his severe symptoms such as the Raynaud’s. Raynaud’s is where your hands and feet can’t regulate in cold temperatures and turn purple or while.
Josiah has other diagnoses that we fell onto when getting our answers such as: PANDAS, a neurological physiological defect due to strep infections, Autism Spectrum Disorder, and a blood platelet coagulation defect.
Josiah is only two years old and has had over 300 tubes of blood drawn since birth. I am blessed to be a mother to a rare disease warrior.
The Cabrera Family is blessed to have CMN and their help with Direct Financial Assistance Program (DFAP). We travel five to six times a month to Syracuse for appointments and approximately five to nine times every six months to NYC, Westchester, Boston, Albany, and many other places to help our child. Without their help, I’m not sure where we would be.
Sammy, Acute Myeloid Leukemia Close
Samuel Allen Shelton (Sammy) was born on February 12, 2018, to his parents, Caleb and Stacie Shelton. He has two older brothers, Hudson, 10, and Benjamin, 8. They reside in Watertown, New York.
Sammy was diagnosed with Acute Myeloid Leukemia when he was just seven months old. He spent the next six months as a patient at Upstate Golisano Children’s Hospital in Syracuse, New York. On April 2, 2019, he rang the cancer-free bell, signifying the end of treatment, and was able to return home.
The following month Sammy and his family attended Camp Sunshine, a camp in Maine for children with special medical needs. The family’s vacation was unexpectedly cut short when Sammy relapsed and was immediately taken back to Golisano Children’s Hospital. He was extremely ill with leukemia again; the doctors recommended a life-saving bone marrow transplant. However, he would need to be in complete remission before the transplant could occur.
After two months of residing at the hospital in Syracuse with his parents, Sammy was finally well enough to travel to Strong Memorial Hospital in Rochester for the bone marrow transplant. Finding a bone marrow match is much more difficult than matching blood types. Sammy’s immediate family members were tested, but no match was found. When the search was expanded, a 100% match was found from a donor registry in Germany. A small package of cells traveled with a courier all the way to Rochester on September 24, 2019, and the doctors were ready to complete the procedure.
This was a very emotional time as his family anxiously awaited the news they were so desperately hoping for. They were finally told that the transplant was a success and in December, Sammy was able to go home. His brothers, who had been lovingly cared for by their grandmother during all this time, were relieved to have everyone together again. His family is so grateful for the care that Sammy received and for the overseas donation that saved his life.
Sammy has been cancer-free since that time, but he continues to deal with side effects from chemotherapy and other treatments, which have taken a toll on his little body. He has a G-Tube in his stomach to aid in eating and administering his multiple medications. He also has neurological issues, neuropathy and receives several different therapies each and every week. Many specialists still monitor his condition very carefully.
Despite all he has been through, Sammy is a happy, fun-loving boy who loves to play with dinosaurs and ride his tricycle. He and his brothers are home-schooled by their mom, and he especially enjoys learning the alphabet, writing his name, and reading books. The doctors all say he is a “miracle baby,” and his family certainly agrees. Sammy is a little fighter who loves everyone and continues to be “Sammy Strong.”
Finley, Autism Spectrum Disorder Close
When Finley and his twin sister Eve were born six weeks early, they spent 10 days in the NICU. Finley ate well, laughed and giggled, but his parents often noticed that his facial expressions were odd. By the time Finley was 18 months old, neither he or his sister were talking. Compared to big brother Ivan, having nearly silent children was strange for Mom and Dad. Early Intervention began working with both children and while Eve progressed, Finley did not. When Finley turned two years old, his provider suspected Autism. The family took Finley to Kirsch Developmental and Behavioral Pediatrics in Rochester and he was diagnosed with Autism Spectrum Disorder (ASD).
Finley is non-verbal and struggles to communicate his feelings, wants and needs. The Children’s Miracle Network program at Samaritan Medical Center purchased an Augmentative and Alternative Communication (AAC) speech device to help him communicate. This is a handheld device with pictures of things that he can touch and the device speaks the word. The part of Finley’s brain that should alert him to danger does not work the way it should. He has a tendency to run, climb and wander, sometimes away from safe settings and needs supervision at all times. With the help of CMN, a customized fence was installed so that Finley can safely go outside to play with his sister and brother.
Finley is a happy seven-year-old who loves to go to school. He is in a self-contained classroom with opportunity to attend some regular education classrooms for certain subjects. He has an aide to assist him in school and answers questions using his AAC device. He rides a special bus to school with his aide and has a special harness to keep him safely in his seat for the ride.
Kai, Brain Tumor Close
Kai’s mom remembers the days before his diagnosis with total clarity. Her son had an unrelenting headache for a staggering nine days, so blinded by the pain that he couldn’t leave his darkened bedroom. After several trips to see the doctor, with recommendations to let his “virus” play out, Kai told her that he couldn’t “take the pain anymore” and off to the hospital they went.
Within 90 minutes he was diagnosed with life-threatening hydrocephalus, a collection of fluid on the brain. An MRI showed a tumor on the Pineal Gland, and doctors said that the hospital trip had saved his life; he wouldn’t have lasted another 24 hours. Kai had emergency surgery to reroute the fluid, which was a success. He was monitored for the next three months with MRIs, which revealed that the tumor had not grown or changed.
He will continue to face challenges, but nothing can dull Kai’s smile. He dances – literally dances! – his way through stressful times and he can turn any negative situation into a positive one. During one memorable incident, a nurse attempted to put in an IV three times, before Kai put his hand on hers and said, “Take a deep breath and try again, you’ll get it. Don’t worry about hurting me. I’m fine.” The nurse welled up with tears, tried again – and got it in. Kai cheered and gave her a high five.
Raelynn, Congenital Heart Disease – Tetralogy of Fallot Close
For years our family listened and donated to the CMN Radiothon – always wanting to help others – but never fathomed that one day we would need that help ourselves.
Raelynn was born at Samaritan in November 2016 – a few weeks early, but seemingly healthy from what we knew. After 24 hours of up and down glucose tests, she was admitted to the NICU. Upon her admittance Dr. Komar found and diagnosed a heart defect – Tetralogy of Fallot. At three weeks old we handed Raelynn over to a doctor we just met – in Rochester – for her first Open heart surgery.
Being from the Watertown area our whole lives – our story had gotten around during the two months we spent in the hospital during a rollercoaster recovery. Friends and family had stepped up to help care for our 3 year old twins at home.
When Kristin (CMN) reached out to us a few short months later it was a huge blessing – as we had just been told that Raelynn needed a 2nd surgery on her tiny heart. We received our first DFAP (Direct Family Assistance Program) check the day we left for that surgery. It ensured that we could pay our rent and bills to keep a roof over our heads, and take care of our children even when away from home.
Since that day we have been a part of a family and met so many amazing people. We have had the chance to attend events that would not have been possible without CMN, and Miss Kristin has always made sure that all 3 of our girls were included. We have been honored to take part in every fundraiser that we possibly can. We are beyond grateful to have the love, support and lifelong friendships that we have built with other CMN families. We are always there to lean on and help one another in any way possible – it truly takes a village!
Ryley, Rett Syndrome Close
“Hi! My name is Ryley. I have Rett Syndrome – an awful neurological disorder that messes up everything I try to do – and it mainly affects girls! I cannot talk, use my hands or move around very well, but I can hear you. I understand you. I am smart. There are hundreds of thousands of girls like me.”
Ryley is a happy fun loving beautiful little six year old girl! She developed normally until about 12-18 months when she was diagnosed with Rett Syndrome. Rett Syndrome is a debilitating neurological/movement disorder that primarily affect females. Rett Syndrome is the leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands. Rett Syndrome is as prevalent as ALS, Cystic Fibrosis and Huntington’s Disease. Sadly, another baby girl is born afflicted every 90 minutes. Rett Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. Rett Syndrome is potentially reversible – research shows once protein levels are normalized, symptoms subside.
Children’s Miracle Network of NNY has helped Ryley and her family through our Direct Financial Assistance Program (DFAP). CMN has provided reimbursement for travel expenses incurred during her appointments with specialists/hospitalizations in New York City.
“I would like to say thank you to Samaritan and CMN for allowing us to share our story for the last year! Time sure flew by. We had so much fun meeting all the people and lending our help. CMN has helped us in raising awareness for Rett Syndrome as well as bringing awareness to our many friends. With Ryley being nominated as the Champion and her face being everywhere many people have supported us along our journey. CMN helped us travel to NYC for important doctors’ appointments and covered Ryley’s dental bills. It has meant the world to me to have our story told all over the North Country and bring a voice to my beautiful daughter’s journey! Thanks again for all the love and support!”
–The Weaver Family
Natalie, Acute Lymphoblastic Leukemia Close
Natalie was diagnosed with high risk acute lymphoblastic leukemia two weeks before she turned two years old. She spent two and a half years in treatment where she faced significant challenges. She received treatment through Upstate Golisano Children’s Hospital and the Waters Center for Children’s Cancer and Blood Disorders at the Upstate Cancer Center.
Children’s Miracle Network of NNY helped Natalie and her family through our Direct Family Assistance Program (DFAP). CMN provided reimbursement for travel and medical expenses incurred during her treatments/hospitalizations in Syracuse.
Natalie is now 6 years old and is in 1st grade. She has been off treatment for the past two years and doing well. She has a new passion for reading and loves to teach her younger brother all the skills she has learned in Reading Recovery, Speech, PT and OT. She has a huge heart and will always be Natalie the Brave.
Charlie, Severe Neurologic Impairment Related to Prenatal Bilateral Anterior Circulation Ischemic Stroke Close
When we found out we were having a child our whole world changed. We began imagining what pregnancy and parenting would be like…a cute little belly and fun cravings. And then when our little baby came into the world, we imagined sweet smiles, watching her first steps, eventually teaching her all kinds of things.
Pregnancy looked a little different than what we imagined. I was sick for a majority of the pregnancy losing weight instead of gaining then right at the end swelling up like a balloon; I had what is called HELLP Syndrome. Because of this I was rushed in to an emergency C-section where my husband was not able to come in with me and I was not conscious for her birth. This was not at all how we envisioned welcoming Charlie Mae into the world.
At home we did not get the sweet smiles and coos we were expecting either. Our sweet little peanut cried all day every day. We were a constant presence at our pediatrician’s office. It wasn’t until Charlie was around four months old that we noticed some new behaviors. She began to develop a lazy eye on the right and would use her left arm but not her right. We decided to just check to be sure so we made an appointment at Upstate with a neurologist. That was the day our lives changed completely.
The neurologist said a lot of her behavior was concerning and it was possible our little girl had suffered a stroke and was having seizures. To pinpoint the extent and cause of the seizures, we were admitted into the hospital for a 12 hour EEG an MRI and a spinal tap to rule infection. We spent the night fussing and worrying while Charlie was connected to more cords than I could even imagine until it was time for the MRI and spinal. Then, the doctors came back with the results.
Diagnosis: perinatal stroke in the Parietal and Occipital lobes effecting the left and right side of the brain but more focused on the left. This is Charlie’s cause for her Cerebral Palsy.
We began traveling to Upstate weekly for the next few months. Charlie was put on a very high dose of Prednisone to decrease the swelling of the brain and end her seizures – and it worked! We were thrilled and so proud of our little girl when we were told her EEG was clear.
Charlie’s journey continued at the Children’s Hospital of Philadelphia (CHOP) where we meet with a team specializing in pediatric strokes. We still visit CHOP regularly to see the stroke team. They have helped us give Charlie the tools she needs to continue to improve every day. She uses a feeding tube to help her get all the nutrition she needs to grow and thrive.
We also visit a Pediatric Neuro Ophthalmologist. Charlie has had eye surgeries to help straighten her right eye which has exponentially increased her range of vision and has allowed her to be more successful reaching and grabbing items which she had not been doing at all until that time.
Today Charlie is a 5 year old ray of sunshine. She loves to spend time with her family. Despite being non-mobile, she really stays active! She enjoys riding her bike [which her grandpa adapted for her], swimming and going for walks. She really loves school where she gets to learn from her friends and peers in addition to getting all of her therapies she needs to improve all of her skills. She may not yet be able to say any words other than “Yea” but she sure does get her point across in her own way. She has a fabulous personality and her smile is contagious.
In Charlie’s day to day life, there is a lot of heavy equipment and a great deal of work on Charlie’s part. And every day she rises to the challenge. I have never seen a child that works harder than our little girl!
CMN has helped us with trips to CHOP – a real possibility long term. As one would imagine, these trips can be very costly. Without CMN, we would not have been able to pursue the best care possible for our child. We have also met other families through the CMN group who know exactly what we are going through and it has been instrumental in our ability to heal and become the best parents we can to our amazing little blessing, Charlie. She truly brings joy to every person who meets her. She is so loved and has the best sense of humor a little kid can have. Her heart is so big and she has so much love to share with the world.
I would like to thank you for any help you may be able to give the Children’s Miracle Network. Without their help, many children would not get the support they need to live their true best lives and we are so very thankful for them every day.
–The McNitt Family
Adeline, Velocardiofacial Syndrome, Tetralogy of Fallot Pulmonary Atresia VSD MAPCAS Close
Adeline was born September 24, 2013 at Crouse Hospital in Syracuse, NY with a rare congenital heart defect that was paired with a chromosomal deletion called Velocardio Facial Syndrome.
September 9, 2015 was Adeline’s first open heart surgery. Operating was Dr. George Alfieris at Strong Memorial Hospital in Rochester, NY. This surgery was approximately 11 hours. She had a few expected complications and also a couple that were not expected, but overall her full stay was 14 days.
The chronic steroid use caused her adrenal glands to shut down. Over time her lungs started to become a larger issue after spending the better parts of September-April each year in and out of the hospital, usually testing positive with multiple respiratory illnesses at once. With her specific heart diagnosis and chromosomal deletion, the severe pulmonary issues Adeline ended up being diagnosed with isn’t the “norm” for children like her.
September 12, 2018 was her second open heart surgery also performed by Dr. George Alfieris at Strong Memorial. She did have more severe complications this time. We were there for a month. She came home with a central line for me to administer infusions around the clock for an extra four weeks after discharging the hospital.
Before, between, and after both open heart surgeries she dealt with countless hospital admissions, other procedures, imaging, bloodwork, and testing.
In April 2019, due to the constant wear and tear on her lungs over the years that had finally taken its toll, her pulmonary specialist had exhausted all of his resources from different medications, medical devices, biopsies etc. He referred us to get a second opinion at the Morgan Stanley Children’s Hospital Columbia University in NYC. They had only one diagnosis in mind which is a progressive illness and would need a double lung transplant.
In July 2020 we went to Pittsburgh, PA to visit the Children’s Hospital there which is home to the top lung/heart transplant specialists in the country.
Adeline’s heart is so complex she could not get a heart transplant without a lung transplant or vice versa. She endured a week for a very intense and busy transplant evaluation. This included 8 to 10-hour days of testing, imaging and bloodwork, and meeting all of the specialists she had the possibility of working with if she were a transplant candidate. Her last day there she had a cardiac catheterization. The cardiologist placed a balloon in an artery in hopes it would cause stronger blood flow to the lungs and also place a coil to close an artery off with the intention of aiding the artery he ballooned.
The transplant team consulted and they deemed she was not a candidate for a double lung/heart transplant since her mortality rate was at 94%.
In December, 2020 we went back to Pittsburgh for another cardiac catheterization only to find that the interventions he implemented ended up doing nothing for her heart, but (not due to the balloon and coil) her pressures had actually worsened. At the post-op consult I felt the sincerity in the Doctor’s eyes, voice, body language. He assured me I should never wonder if I left a single stone unturned. He expressed “This child is here today because of you. Because of your persistence, advocacy, fight, and instincts.”
Adeline was placed in the care of Hospice of Jefferson County on April 27, 2022 and took her last breath early September 11, 2022.
Despite all she had been through, this witty, tenacious, brave, smart, pretty little 8 year old was always smiling.
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