Children’s Miracle Network
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.
Our Miracles in the Making
Kai, 6, Brain Tumor Close
Kai is our 2020 Local Champion!
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, 3, 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, 6, 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, 3, Acute Lymphoblastic Leukemia Close
Natalie was diagnosed with B-Cell Childhood Acute Lymphoblastic Leukemia three weeks before she turned 2 years of age. She was placed in the “high risk” category at the time of her diagnosis. Natalie has been receiving intense chemotherapy both as in inpatient and an outpatient for the past year. She will undergo further treatment for at least two more years.
Children’s Miracle Network of NNY has helped Natalie and her family through our Direct Family Assistance Program (DFAP). CMN has provided reimbursement for travel and medical expenses incurred during her treatments/hospitalizations in Syracuse.
Charlie, 21 months, 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.Nearing a year and a half after Charlie’s diagnosis we are still visiting CHOP around every 6 months to see the stroke team. They have helped us give Charlie the tools she needs to continue to improve every day. We also visit the Pediatric Neuro Ophthalmologist.
In January, Charlie had her first of at minimum two 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.
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!
Charlie’s future is unknown at this time. Though she is not able to say any words she has learned to communicate some of her wants to us. We think she is highly intelligent as she can follow simple instructions. Only time will tell if she will be able to talk or walk independently but we just take it one day at a time.
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, 6, Velocardiofacial Syndrome, Tetralogy of Fallot Pulmonary Atresia VSD MAPCAS Close
On September 9, 2015 Adeline underwent her first open heart surgery, and her second was on September 12, 2018. Over the last 6 years, Adeline’s lung function has declined due to multiple respiratory viruses, complications on extubation post-op, and the progression of her already existing lung diseases. She is awaiting a consultation with a transplant team out of state to discuss getting her on the transplant list and how what we can do in the meantime.
As the parent of a medically complex and fragile child, I constantly struggle to find the balance of treating your child as if today is their last day and that they’ll be here for the next 40 years. But just as they say, it does no good to dwell on the past, the same goes for focusing too far into the future because either way you’re still missing the important moments happening in the present.
I don’t know what tomorrow will have in store for us, but since tomorrow hasn’t happened yet I will focus on the here, the now, and how every single day I am grateful for my daughter.
More than 30 years of dedication.
Since 1990, Children’s Miracle Network of Northern New York at Samaritan has helped thousands of families with sick and injured children. Its commitment to ensuring quality healthcare for children is strong. The need in the community is still evident, and without community involvement, CMN would not be as successful as it is today. The hallmark of Children’s Miracle Network Hospitals is that 100% of funds raised locally stay here to help sick or injured children in Jefferson, Lewis and St. Lawrence counties. No child is ever turned away, regardless of their ability to pay.