Our precious three-year-old baby boy, James Ryan Nuovo has been diagnosed with a rare blood disease called Hypocellular Myelodysplastic Syndrome. It's so rare that the chances of a child having this disease is ONE out of every MILLION children. He is currently waiting for a donor, because he desperately needs a bone marrow transplant to survive!
My name is Mark Nuovo, my wife Courtney and I would like to share with you the story of our youngest son’s journey with a rare blood disorder. All my life I never imagined I would be reaching out to others for help. This is the hardest and most difficult experience I’ve ever dealt with as a husband, father or even as a firefighter. As a firefighter I help people, I come to their rescue, I do what I can, what I’m trained to do to help them with their problem, that is my job; I know what to do and how to do it. But when my son became sick, I didn’t know what to do, I couldn't help or rescue him. As a father you’re never trained how to prepare for the unimaginable or the unthinkable.
My wife Courtney and I have four children; ages 15, 9, 5 and our precious 3-year-old baby boy, James Ryan. A couple years ago our youngest son James became sick with a rare blood disorder and it wasn’t until recently that he was diagnosed with an extremely rare blood disease called Myelodysplastic Syndrome. This disease impairs his bodies ability to make blood cells and is more common in people over the age of 60. It is so rare in children that it only occurs in about one out of every million children a year.
His disease has a poor prognosis and without a bone marrow transplant his chances of survival are uncertain. His disease has already began showing signs of progression and the evolution of his disease often evolves into Acute Myeloid Leukemia. He is and has been at risk for uncontrollable bleeding from minor trauma, being overwhelmed with infections from any germs he may come into contact with and anemia.
We have spent the last two years trying to establish a diagnosis for him just to be able to begin treatment. During all this time he has been isolated from the world, because he has a weakened immune system. He hasn't been able to go to day care, the grocery store or anywhere a large crowd of people have gathered. He has not been able to go out and enjoy life as children his age are able to do and has missed out on typical childhood activities, vacations and even family gatherings. He has never been able to play with children in the neighborhood, go to an amusement park or even play on the playhouse at McDonalds. And because of his compromised immune system, his mother was unable to return to work, because she had to stay home to care for him and protect him from the germs that most of us don't ever think of out of fear of his little body being overwhelmed by them. Even a common cold could make him very sick and hospitalized on intravenous antibiotics, because his immune system cannot handle the invading germs.
When we found out James was sick our lives were completely turned upside down. Courtney took James in for a routine 15-month-old wellness visit. James seemed so happy and healthy, he had been hitting all of his developmental milestones and we never expected the news we would receive. At his wellness visit with his pediatrician, they ran a routine blood test that all children have done at that age. Courtney waited for what seemed like an eternity but was just a few minutes for the results and when his pediatrician returned with his test results, she had an extremely distressed look on her face. She said something was very wrong with James and said that he was severely anemic and he may need a blood transfusion.
James was taken to a hematology and oncology specialist for pediatric blood disorders, and that is where he received his first blood transfusion, that without a doubt saved his life. They ran several more blood tests and performed a bone marrow biopsy the following morning. The results from those tests confirmed that something very bad was happening inside his little body, but they were unable to diagnose him. This was our worst nightmare coming true. Something that you only hear about happening on the news and never expect to happen to your child. We never suspected anything was wrong with our baby boy and all of the sudden he was fighting for his life. We never imagined something like this could happen without warning and we had become one of those families you read about in the news.
Over the past two years, ever since that day our world has turned upside down when we were told our baby boy was sick. He has had countless blood tests, genetic tests, skin biopsies, blood transfusions and six bone marrow biopsies trying to find out what was happening inside his little body. We had all of his tests sent out all around the United States for doctors and specialist to review, trying to help diagnose his condition. He was suspected to have all kinds of different inherited bone marrow failure syndromes, but none of his tests could confirm the suspicions of his doctors. Meanwhile his bone marrow continued to fail and he was completely dependent on blood transfusions to keep him alive. It wasn't until his mother wanted to try a treatment that nobody else had thought of, to have doctors start James on steroids, just to see if they would help his body fight off the disease. She was right, his body responded to the steroids and began making enough red blood cells to maintain a hemoglobin level that kept him from needing frequent blood transfusion.
But the amount of red blood cells, white blood cells and platelets continued to dwindle. James' bone marrow was still failing and before long his disease began to progress. My wife got tired of waiting around for the doctors to try to figure out what was going on with him without doing anything to treat him. She searched for months trying to find the perfect hospital to send his file to, to be reviewed and establish a treatment plan. After months of searching, numerous phone calls to hospitals and doctors, finding hospitals that actually have experience in bone marrow transplants for pediatric patients with Myelodysplastic Syndrome all around the United States. She finally found the right Hospital for him in Atlanta, GA. She had his file sent to the Children's Healthcare of Atlanta, where the specialists there were finally able to diagnose him with Hypocellular Myelodysplastic Syndrome.
The doctors in Atlanta said that he needs a bone marrow transplant as soon as possible, due to the amount of blasts that have accumulated in his bone marrow and that it may soon turn into Acute Myeloid Leukemia, a very aggressive form of leukemia that is difficult to treat. They said the transplant is the only option for us to improve his overall chances of survival.
The search for a donor was initiated and ended with a donor that was supposed to donate and James would have begun treatment on September 19th. However, we received news that this donor is now unable to donate, due to unforeseen circumstances. This is devastating and discouraging news that we now have to try to find another donor. James still has a few donors available, but now he will have to wait for the donors to go through a lot of testing to see if they are suitable donors for him. This sets him back and may potentially push his treatment timeline out and allow for further progression of his disease.
Once a suitable donor is found, James will first go through chemotherapy to suppress his immune system even more to keep his body from rejecting the bone marrow transplant and to kill the blast cells that have accumulated in his bone marrow. Once he is finished with the chemotherapy, he will undergo the bone marrow transplant. They will harvest the donor's marrow and a courier will then fly nonstop to bring the donor's bone marrow to the Children's Healthcare of Atlanta to be infused after James finishes his chemotherapy regimen. He will be hospitalized anywhere from 4 to 6 weeks during and after his transplant. Once he is discharged from the hospital, he will have to stay in Atlanta for at least three months for follow up care and treatment as he will have no immune system to protect him during this time until his donor’s cells grow and replenish his bone marrow with healthy blood cells.
Atlanta is almost a four hour drive from our house in Irmo, S.C. and we have to be within a 60 minute drive time to the hospital once he is discharged. James and his mother will hopefully be staying in a Ronald McDonald House if they have room available. If not, we will have to find a hotel in Atlanta for James and my wife to stay in. I will have to come back home while my wife and son stay in Atlanta so I can continue working and caring for our three other children during his treatment.
This is going to be the hardest thing our family will ever have to go through. Not only will James have to endure all the effects from the chemotherapy and surviving the transplant, he will also be away from his family, his home, his brother Matthew and his sisters, Julie and Katie. We are hoping and praying for the best and to have him home before Christmas. We also know that this is only the beginning of his journey of battling this disease.
We are in desperate need of financial and spiritual support. Please DONATE if you can afford to give and SHARE his story with everyone you know even if you can not afford to donate. And most of all please PRAY for James, our family and his donor as we continue this journey to giving James a healthy life. Your support will help to lessen the financial and emotional crisis of the costs associated with his transplant, his follow up care and the extra costs of living in Atlanta for 3-4 months and also the lifelong follow up care he will need afterwards. We are so thankful for the love and support that everyone has shown our son and It would mean so much to our family if you too could help.
This link will explain what Pediatric MDS is and if you scroll down in the article it has a lot of different tabs such as, what is MDS, what causes MDS, etc. Pediatric Myelodysplastic Syndrome (MDS) - Dana-Farber/Boston Children's Cancer and Blood Disorders Center
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