By Nancy Price
When Laura and Jeff McLinn learned that their son Jordan, then 3, had Duchenne’s Muscular Dystrophy (DMD), a progressive and fatal muscle wasting disease that affects about one in every 5,000 boys, they were shocked … and devasted. Although Jordan was a little behind his peers developmentally, he seemed completely healthy otherwise.
After the initial shock wore off, the McLinns relied on their faith, praying often and began research on the disease.
“One day, I said, ‘We’ll make every day the best day ever,’” Laura said.
A FOCUS ON THE FAMILY
Best Day Ever Foundation is a 501 (c) (3) nonprofit in Perry Township, where the McLinns reside. “The Best Day Ever Foundation is a unique not-for-profit that my wife started because she saw how this disease not only affected Jordan, but the rest of the family as well,” Jeff said. “She not only wanted ‘the best day ever’ for patients with life-threatening illnesses but to also focus on the siblings and parents who have been affected and have sacrificed throughout treatments and declines in health.”
The foundation raises money for families to spend time together. For example, a family was given a set of bikes so they could all ride together. Gifts, such as a movie or a Starbucks gift card, are given to family members at Christmas. The foundation also partners families with community organizations. Boys may get to visit a local firehouse and be an “honorary fireman” for a day.
“It’s nice to know that there’s a foundation out there to do these random things,” said Vicki Pittman, a Perry Township resident who received a care package with a DVD, popcorn and snacks for a movie night with her son Colton. “It was nice to know that you’re though of because being a special needs parent, you feel like sometimes you’re advocating for your child to get what he or she needs but nobody will do anything from the goodness of their heart.”
HELP DURING COVID-19
Laura is also assisting parents who cannot work outside the home due to caring for their children, on Indiana Medicaid, with life-threatening illnesses. She is helping to navigate them through the process of becoming a paid caregiver during COVID-19.
“This is a wonderful blessing because my son has autism and epilepsy and I’m going to send him back to school July 29. (The schools) may decide to do remote learning,” Pittman said. “He’s 17 and trying to find daycare for someone that’s aged out of daycare is very hard to find. I can’t just leave him with anyone because of his circumstances. With my situation as a single parent, if the school closed down, I won’t have to ask for time off work. I’m nervous about a job outside of the home because of COVID-19 and I’m a cancer survivor. I have to be careful.”
Laura is also sharing research and clinical trial information to help other families who have a child with DMD. Jordan, now 11, started taking prednisone, a steroid used to treat a number of diseases and conditions, and is trying medications designed to slow the progression of the disease. Currently, he is one of just 16 boys with DMD taking Viltolarsen, an experimental therapy developed by NS Pharma. Jordan receives the drug weekly through an IV.
SLOWING THE PROGRESSION
Efforts taken to reduce the disease’s progression are working. “We didn’t think he’d still be walking,” Laura said. “He rode a bike; we didn’t think that was possible. We didn’t think he’d be able to walk the stairs; he can, which is incredible. He’s definitely exceeding, physically.”
Laura also noted that since Jordan’s DMD diagnosis, there were no clinical trials. Now, “there are more than 30 treatments companies are currently working on,” she said. “Now, families are trying to decide which clinical trail (they’ll use).” It’s exciting that families are facing that dilemma right now. Just eight years ago, we walked out of the doctor’s office with zero hope and now there’s a chance for a cure for the disease or greatly increase a life expectancy.”
If you have a child who has been diagnosed with a life-threatening medical condition, check out bestdayeverfoundation.com/register-1 or contact Laura McLinn at email@example.com.
HOW CAN YOU HELP?
Best Day Ever Foundation invites anyone in the community to help with its mission, whether through fundraising, volunteering your time and talents, or helping to connect with families who can benefit from its services. The foundation is looking to raise funds through a trivia game night this fall. For more information, go to bestdayeverfoundation.com or facebook.com/bestdayeverfoundation.