Wednesday, April 11, 2012

Connor's Crusaders

The folks over at Cox Rhode Races have been encouraging the runners to use their marathon training as an opportunity to raise money for a good cause. Generally, I'm much more likely to donate to a good cause than try to raise money for one. That's just my way. Recently, however, I discovered that a couple of good friends of mine from my teenage years have a son, Connor, with Duchenne Muscular Dystrophy. Connor is Kaylee's age, and I imagine that he's a lot like Kaylee in many ways. He probably plays with Legos, plays pretend, and enjoys chaos as most pre-schoolers do. But Connor is different too. Duchenne Muscular Dystrophy is going to make Connor's life harder. I can't do anything about Connor's DMD, but I'd like to help. I'm dedicating my marathon to Connor's cause, and since the folks over at Cox Rhodes Races have been kind enough to give me a number, I will begin by donating the cost of a number ($100) to Connor's Crusaders. Below is a letter written by Jon and Kira, Connor's parents, explaining DMD and the Connor's Crusaders special needs trust fund. You also visit Connor's Cure, which currently has a post quoting a local paper story on Connor and his family. All donations are greatly appreciated!
Join Connor’s Crusaders . . . to help Connor with the battle of his life! Connor has Duchenne Muscular Dystrophy. DMD is a degenerative muscle wasting disease affecting 1 in 3,500 mainly boys. DMD will put this lively 4 ½ year old in a wheelchair between 10-12. Boys with this disease don’t usually survive into their twenties due to heart and lung issues. These muscles will weaken to the point of failure. There is no cure and it’s 100% fatal.

While Connor’s diagnosis has been difficult, we are focusing on how we can improve the quality of his life. And that means many appointments, travel, treatments and costs. Big ones are the wheelchairs, van and home modifications. Day to day items include supplements, orthotics, and steroids.

We have set up a fund to help defray the costs of his care. Our goal is to keep him walking for as long as possible until a cure is found. This is a Special Needs Trust Fund ONLY for Connor that can only be withdrawn from under very specific circumstances such as medical need.

While donations to the MDA and other Duchenne communities are greatly needed to fund research so that we can find a cure, we are focusing our efforts on improving his quality of life now and into his future. Contributions on a personal level for Connor and his specific needs are immensely needed and appreciated.

We will be holding an annual event however details are yet to be determined. If anyone has any ideas or would like to help, please let us know.

For every minute for me, it’s really four minutes for him. For every meal, it’s four. For every Birthday for me, it’s really four Birthdays for him. Let’s make every second count!

Jon and Kira Mullaly
To donate to Connor's Crusaders through PayPal please click below. You don't need a PayPal account. Donations can be made via credit card. It's safe and secure, goes straight into the Connor's Crusaders fund, and it's for a great cause!

1 comment:

Kira said...

Wow Katie! Thank you! This is truly amazing you would do this for Connor and our family. We are so grateful and blessed for the support and visibility into Duchenne. Thank you!