Filling the boot will help ill children shine

This weekend, Great Falls firefighters will be collecting money for the annual Fill the Boot fundraiser for the MDA.

The Muscular Dystrophy Association assists families afflicted with one of over 40 neuromuscular diseases. The funds help pay for clinics held in cities around the state. Families are able to see physicians for annual visits and receive assistance obtaining equipment such as wheelchairs and braces. The funds also go toward summer camp.

Summer camp was the highlight of my two sons’ entire year. They started going in 2001 and continued until they reached the maximum eligible age of 18. Camp lasts for five to six days and has been held at Camp Mak-A-Dream near Missoula. More than one full-time nurse is available 24/7 to assist campers with unexpected illnesses and medications. Cooking staff also is available, with enough food to feed campers, staff and volunteers. Some items are donated, but most of the costs to fund camp are paid for by the annual lockups and fill the boots events around the state.

My boys were diagnosed with Duchenne Muscular Dystrophy, a form of MD that causes muscle deterioration all over the body. When they were in grade school, they were able to walk but were never strong enough to jump, ride a bike or run.

The boys were confined to power wheelchairs by fourth grade and soon faced multiple doctor visits throughout the year along with major surgeries. As they became older and faced more obstacles in their daily lives, camp became more and more important to them. It was a place they could dance with girls, stay up late, and be as close to a normal kid as possible. My sons, Christian and Drew, forged friendships that lasted years and sadly ended too soon.

Some kids went to camp and had to spend much of the time in bed or resting, but it still meant the world to them to be there. The counselors played tricks on each other, they made hilarious music videos, dressed up, lip-synced and rode in sidecars next to Harleys.

If it wasn’t for the loving hearts of so many Montanans, my boys would have never met Mikey, who passed away two years ago, or Natoma, who passed away weeks before Christian in October of last year. Summer camp was the only place my sons were able to see their friends. As many neuromuscular diseases progress, many of the kids rarely leave home. For the last year and a half of Christian’s life, he had to stay tilted in his wheelchair to alleviate pain. This made it difficult for him to do things as simple as going to the grocery store.

I have many photos of Christian to look at that give me comfort from losing him far too soon. He had the most beautiful, genuine smile I have ever seen. Hardly ever did he shine as much as he did at MDA summer camp. I will be forever grateful to everyone who has donated to Fill the Boot and to the many firefighters who volunteer their time to help such a wonderful cause.

Please help the kids who are attending camp for the first time or for their last — it truly means the world to them.

Lisa Haney has lived in Great Falls since 1997; she is a full-time caregiver for her 20-year-old son, Andrew. Both of her sons attended the MDA summer camp through age 18. Read her blog at montanaforever.com; she also launched on Facebook a group called Montana Duchenne Muscular Dystrophy.