Double Your Impact: Support Van's Needs

The Mary Bump Memorial Foundation is teaming up with Pat Carpenter at Carpenter Law Firm to help this local family get the basic needs met for their son Van who has Duchenne Muscular Dystrophy, which is the most aggressive form of MD.

MBMF and Carpenter Law Firm will match up to $10,000 raised for Van and the Flattery family.

Megan Flattery is a teacher in the Bondurant school district, and my kids still talk about how much they love her and miss her 2 years later! She is so very kind and giving and we are honored to be a part of her and Ryan's story to help Van live his life.

They need $27,000 to purchase these 3 essentials for Van. Help us help them by making every dollar you donate = $2!

Van's story written by his mother, Megan Flattery:

Van’s journey with Duchenne Muscular Dystrophy began when he was four years old. Before we started seeing signs that something was off, he was an average happy baby growing normally. As a toddler, Van learned to walk late, but we thought that was because he didn’t have siblings or cousins to keep up with. At his four-year-old well-child check, we noticed that Van never placed on the height matrix. Van wasn’t flexible & walked unbalanced sometimes. His pediatrician thought his growth plate stopped growing. Van had an x-ray that showed no abnormalities with his growth plate. A blood sample testing for Celiacs Disease came back negative, but they noticed elevated CK levels. A typical level is 20-250. Van’s was 35,000. After an official genetic test at the Neuromuscular Clinic at the University of Iowa Hospital, we had the diagnosis of Duchenne Muscular Dystrophy. Diagnosis day was extremely heartbreaking knowing what this meant.

Duchenne Muscular Dystrophy is a muscle-wasting disease. Van’s muscles do not produce dystrophin, which protects muscle fibers from breaking down. Duchenne Muscular Dystrophy is a progressive disease that weakens muscles over time. Today, Van can no longer pick himself off the floor if he falls, he cannot go up or down stairs without assistance, and he cannot run.

When Van was four, he was playing tee ball for the first time and was getting ready to attend four-year-old preschool. He was still seemingly a typical child. When Van got to kindergarten, we noticed he started getting tired quicker and was less active. That was the year Van received his first manual wheelchair paid through insurance. That wheelchair served him well until 3rd grade. We were not able to apply for a new wheelchair until 5 years had passed to be eligible for a new wheelchair. My husband, Ryan, and I went to a mobility store and paid for a smaller take-apart electric wheelchair to give Van some independence from someone always pushing him in the manual chair. That was roughly $1,800. Van had played baseball every season until 3rd grade when he finally had to stop because he was physically unable to play the sport.

Last year, the vehicle we had to buy with the wheelchair modification was $60,000, for which we received $6,500 from the Health and Disability Waiver to help offset the cost.

Our next challenge is creating an accessible entryway for Van. This is one of many projects we will need to make it so Van can live his life. The remodel will cost $18,000 and we are eligible to receive $7,000 from the Health and Disability Waiver to offset the cost of this one project.

Van was fitted for a new automatic wheelchair, but insurance refused to pay for the stand-up assist, saying it is "not medically necessary." It is becoming increasingly difficult for Van to stand-up from his wheelchair. The cost for the stand-up assist is $10,000 out of pocket.

We also need a medical-grade bed for Van. He is unable to get out of bed without assistance. Ryan and I perform 20 minutes of stretching each night and assist Van in putting on his leg braces in the evenings. The bed he needs costs $6,500.

Watching Van lose his ability to walk, run, play sports, and ride a bike has been difficult for Ryan and me to watch. Van is losing some of his independence with each new phase of the disease, which will eventually leave him permanently in a wheelchair. Luckily, Van is only physically disabled. He maintains a wonderful sense of humor and is extremely smart. He plays a synthetic plastic trombone (pBone) in the 5th grade band. Van turned 11 years old last month. He is a typical pre-teen who likes video games, Star Wars, Iowa Hawkeyes, Legos, and watching sports. Ryan is an avid outdoorsman and tries to give Van experiences in fishing, ice fishing, hunting, and boating. We have become quite creative in making these activities accessible for Van. Van also has a little sister, Sammie, who also steps in as a caretaker when Van needs assistance.

Thank you for reading Van’s journey and I would like to express our sincere gratitude for the positive impact your donation will provide for Van. Spreading DMD awareness is critical for all boys impacted by DMD.

-Megan