
Muscular Dystrophy Support for Baby Griffin
Donation protected

Some of you may already know about Lori’s 4 month old grandson Griffin. He lives in Iowa with his Mom (Lori’s daughter Kimberly) and Dad and 3 brothers. Griffin was diagnosed with muscular dystrophy. His genetic testing showed he has type LAMA2. It is a rare and very severe form. He is already getting tube feedings, as he cannot swallow properly. Muscular Dystrophy is a progressive muscle weakening disease, and it will affect his breathing at some point. The doctor’s say there are lots of things he may never do, such as walk, but he is already getting therapies to help him. The life expectancy with this form is shortened, with very few kids making it through adolescence.
Lori has decided she needs to be in Iowa to help the family, and to be part of little Griffin’s life. She has left the job she loved and packed up to move 500 miles away. Nelson is staying in Arkansas to work for now. Since no one knows what the future holds, they are taking things a day at a time. Griffin has appointments with specialists every week, and needs physical therapy throughout each day. Griffins tube feedings are every 3 hours and he requires 24 hour care. And his big brothers need some attention too.
Griffin’s mom Kimberly has been unable to return to work due to his constant care. It would not be safe for him to go to a daycare, especially now with Covid. As you all know, tying to make it on one income is nearly impossible anymore. They are waiting (and waiting) for Medicaid to be approved, but in the meantime there are so many expenses.

Organizer
Rhonda Smithee Dongardive
Organizer
Springdale, AR