A smile says a lot about you. For Michael McDuff, his smile is an inspiration to all as he battles a very rare genetic disease.
Meet Michael. He’s 19 months old and the son to Elizabeth and Mark McDuff. Michael smiles, a lot, and loves playing patty cake and peekaboo with mom and dad. Ever seen Bubble Guppies? It’s his favorite show. Michael is just like any other cute baby, except, he’s battling a very rare genetic disease.
Michael has something known as 13q deletion syndrome. It’s a chromosome abnormality that occurs when there is a missing copy of genetic material on the long arm of chromosome 13. As a result, 13q deletion causes developmental delay, intellectual disability, behavioral problems and distinctive facial features. For Michael, he struggles to walk and may never have the ability to speak.
Living with 13q deletion requires weekly speech, physical and occupational therapy along with six-month visits to see a neurologist, cardiologist, orthopedic surgeon and eye doctor. Michael’s parents are intervening now in hopes he can live the best life possible and not feel discouraged as he grows up.
Michael’s treatment schedule is grueling as his parents both work full-time in order to have health insurance to cover his medical costs. In addition, Elizabeth and Mark pay out-of-pocket for home childcare support, as they are not able to send Michael to a daycare facility.
Michael’s parents applied for and received a grant from The Hope Foundation of the Mahoning Valley. This will help cover Michael’s current treatments as well as provide the opportunity to seek additional therapies. “Sometimes, it’s a challenge to remain hopeful, but with the support of The Hope Foundation, we have a renewed sense of optimism and are grateful for their assistance,” said Elizabeth McDuff.
Michael is a true blessing to the McDuff family and while the future cannot be predicted, Elizabeth and Mark are confident in knowing they have a helping hand from The Hope Foundation.