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Ashley Scelia

You worry for 9 long months whether or not you are going to be blessed with a healthy baby. When they are born and you count those 10 fingers and toes, you breathe a huge sigh of relief. They grow and that worry disappears over the years and then your world is suddenly turned upside down. But, we are one of the lucky ones. Not many people are so lucky. When Nicholas was 6, he was diagnosed with Wilson's Disease, a rare genetic liver disease. He is 1 of 30,000 people that have this disease. There is no cure. It's very scary to have your smart, kind, athletic child suddenly rushed to the hospital for biopsies and further testing when you had almost no signs that anything was wrong. Waiting was the worst part. To most doctors, Wilson's disease is a disease they've never heard of. Over 60% of Wilson's patients are misdiagnosed for years and many receive improper treatment due to rarity of disease. For these people the prognosis is grim, even fatal. Nicholas is one of the lucky ones that was diagnosed before he became symptomatic and he has been receiving the best treatment by the leading Wilson's Disease doctor. With early diagnosis, constant monitoring, and treatment, he will be okay. He'll never be able to eat his favorite foods, drink alcohol, and he'll always have to take his medicine but, most importantly, he can lead a normal full life. But that would not be possible without the Wilsons Disease Association. On October 7th, Nicholas is pledging to walk in an effort to raise money for the WDA. Please help Nicholas reach his goal by sharing his story, donating, or buying a Walk on Wilson's tshirt (available in adult and kids sizes). They even have doggie bandannas for your pups. Please help support our boy. Any bit helps!

 

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