Endurance With a Smile
by Jane Eppard | 12.05.2020
At five-months-old, Nicholas was placed into the foster home of Teresa Dood and her two daughters. It was love at first sight when these three saw his sweet face and irresistible smile. As each month passed, Nicholas knit closer into the fibers of their family. He wasn’t a placement; he was a member.
As Nicholas grew beyond a year old, Teresa noticed delays in Nicholas’ speech and enrolled him into speech therapy. At two years, she noticed oddities in his movement and sought out a physical therapist, who after evaluating Nicholas suggested he see a neurologist.
It was in this window of time, that the rights of adoption became available. Soon after signing the intent to adopt papers, Nicholas had a neurology appointment at Helen DeVos, which lead to a crushing diagnosis. Nicholas had Duchenne Muscular Dystrophy, a degenerative muscle disorder that could take his ability to walk before his teenage years and could take his life in his twenties.
Heartbroken but more committed than ever, Teresa proceeded with Nicholas’ adoption. She knew the road ahead would be hard, but she couldn’t imagine life without him or imagine not giving him the best life possible. At almost three and a half years, Nicholas officially became Nicholas Dood.
For the last 18 months, a nurse has come to their house to administer an IV FDA infusion called Exondys 51. This drug helps the body to skip over the broken gene in Nicholas’ DNA. This drug helps to slow the progression of the disease. It works for only 13% of boys. The Doods feel truly blessed because Exondys 51 is helping Nicholas. He is gaining more strength and has even been able to make small jumps!
Within the last year, Nicholas received the new diagnoses of ADHD and cognitive delays. These kinds of mental health challenges often accompany Duchenne Muscular Dystrophy. In order to meet these new hurdles, Nicholas needed to see Dr. Beurkens from Horizons Developmental Resource Center. Since this holistic medicine wasn’t covered by insurance, Family Hope Foundation provided a scholarship so that Nicholas could receive LENS therapy (Low Energy Neurofeedback System) and new nutritional and behavioral strategies. With the help of physical therapy and holistic medicine, Nicholas continues to grow and develop skills he didn’t have before. Progress comes in small measures, but each new development is a gift. Each new movement is a gift.
Now at the age of seven, Nicholas is like most boys his age. He likes cars, trains, and being outdoors. He is happy and playful. Though he lives with daily pain and daily challenges, Nicholas doesn’t give up. He has endurance. If he falls down, he gets right back up. And he does it all with a smile.