ARTICLES RELATED TO:
Guest Contributors

This blog post is written by Amy, the mother of Dan, a mucopolysaccharidosis (MPS) patient who passed away in 2016 at the age of 19. Amy is a Nemours nurse and her son’s story inspires us and others every day. When Dan was born in September 1996, we were told he was a healthy baby. He joined his sister, Haley, who was 2 years old and we thought our lives were perfect. We had this sweet little family with a precious little girl and strapping baby boy. We had just moved to a new house, both had good jobs, life was good. As Dan developed, he hit all his milestones except for one; he wasn’t talking by the age of 2. He had about 20 ear infections in his first 2 years of life and the pediatrician thought his lack of language was due to him not hearing well. We went to an ENT at […]

David came into our life on March 12, 2019. A beautiful baby boy, David was the perfect addition to our family of now four. In the first months, everything was normal. David was growing fine and hitting each of his milestones. Until one November week, when David wasn’t his normal cheerful 8-month-old self. At first, we blamed it on the antibiotics he had just started a few days prior to treating a “scalp infection” we thought he had. My gut kept telling me something was wrong; this was not the side effect of the antibiotics. David was pale, his stomach was bloated and he refused to eat. We rushed him to the nearest emergency room where they ran blood tests, ultrasounds, X-rays, etc. It was after all the tests came back that the emergency doctor came in to tell us his blood test results. “Your son has cancer.” How did […]

We found hope at Nemours. This is where we learned how to fight. The doctors at Nemours explained the realities of this difficult diagnosis, but they did it in a way that was also filled with hope. They told us that Jude would write his own story. They taught us how to fight for him, care for him and advocate for him. We drive from Charlotte to Wilmington, Delaware for Jude to receive his medical care at Nemours with the incredible team there.

This post was written by Anthony’s mom, Debbie.  “Something was Different” Anthony was about six months old when I started to notice something was different about his back. He would roll over and try to sit up and there was an obvious bulge/curvature in his spine. I took him to my pediatrician who told me there wasn’t anything to worry about. He informed me that some children take a bit longer to sit up on their own. At this time, I had two-year-old twins at home and was very aware that children progress differently, but there was no overlooking the curve of his spine. Unhappy with that visit, I scheduled an appointment with a specialist at a hospital in Philadelphia, PA. Finally a Diagnosis Anthony was about a year old when he was diagnosed with infantile scoliosis. My family was with me in the room when the doctor put his […]

As originally posted on “Love What Matters,” written and submitted by mom, Marcella Stanley “‘I’m sorry, but I don’t think he’s going to make it.’ My husband and I sat flabbergasted, the tears instantly streaming while I struggled to breathe. A room filled with nearly a dozen people stared awkwardly at us as we faced every parent’s worst nightmare. This was not how this day was supposed to go. We found out exactly four weeks prior, at our 20-week ultrasound, that our baby boy had a form of dwarfism. The initial concern was that it was a lethal condition, due to the severity of his skeletal abnormalities and how early they presented in the pregnancy. However, my amazing local OB and maternal fetal medicine physicians researched, and after painstakingly detailed ultrasounds, determined our son likely had a non-lethal skeletal dysplasia. His limbs were awfully short, but his chest was average […]

I celebrated my first National Diabetes Awareness Month in 1990. I was twelve years old, had just started seventh grade, and was very aware of Type 1 diabetes – I’d just been diagnosed with it. Aside from the distinctive smells of insulin and alcohol swabs, I don’t remember much about the time I spent in the hospital after my diagnosis, or about those first few months at home. I do, however, remember the sense of bewilderment that accompanied my family home from the hospital, and how uncertain we were about how our lives would proceed with a chronic condition to manage. If I could go back to that November, there’s so much I would tell my younger self about the reality of living with diabetes. Unfortunately, I can’t – so I’m sharing what I’ve learned here. Don’t panic. It’s true that diabetes can (and will) infiltrate every part of your […]