Given that Obama has set this day aside as a day of service, and given that today is my birthday, and given that I’m inspired by Paull Young, I’m going to tell you about a cause that incredibly personal to me.
If you took high school biology, you know that you have about a one in four chance of getting a recessive trait carried by both parents. These were the odds I had for getting Metachromatic Leukodystrophy. Lucky for me, I wasn’t effected, and I’ve been able to follow my dreams to Chicago. My little brother, Patrick, was not so lucky. In 1993, at age six, he was diagnosed with this rare, life-threatening disease. This was before Google, of course, so little information was easily available to my family.
The Disease
After three months in the hospital and a bone marrow transplant from my sister, Patrick came home (by the way, the bone marrow donor registry is fairly easy to join). The transplant saved his life, but over the following months, the disease slowly progressed, until he was unable to walk or feed himself, and his speech slowed dramatically. If you’re curious about the full impact of the disease, I recommend you watch the movie Lorenzo’s Oil or check out these before and after photos.
Nearly 16 years post-transplant, my brother is still alive and under the care of two of the most incredible people I know. While he’s been considered lucky, Metachromatic Leukodystrophy continues to effect roughly one in 40,000. This is, of course, a small number compared to many diseases, which leaves it up to the families closest to it to come together to raise money for research and support.
The Cause
Through the United Leukodystrophy Foundation, I came across iGive.com, which allows users to align with a cause of their choice and donate a percentage of sales from over 700 stores to that cause. Many of these are stores I shop anyway—why not kick a few dollars back to support the United Leukodystrophy Foundation?
The web has changed the game for charitable giving. Now we hardly have to lift a finger to give part of our everyday spending to charity. Why wouldn’t we? So I encourage you to go to iGive.com, search "United Leukodystrophy Foundation" and align yourself with the cause. Or maybe you have another cause you’re passionate about, that’s OK too.
I could go on and on about how selfless giving from others helped my family get through the trials of 1993, but I’ll leave that for another day and place. Just know that small givings add up, and they mean the world to the people receiving them.
Paull Young
Good on you Allie, glad you get a chance to support a charity that’s so close to you on your birthday.
Thanks for the heads up on iGive.com – looks like a great service.
Hope you have an excellent day!
Dean Suhr
What a great way to honor your brother!
We’d love to connect with your family. We have MLD research updates and a US MLD Family Conference coming in June (Munich in March!).
Best to you,
Dean
Trish Knight
I’m glad to “meet” you! Is your brother Patrick Osmar? I have met Steve and Mary….and Patrick! Awesome people! The Stennis Foundation also is registered as a charity with iGive.com. We are grateful for this support. We raise funds for Leukodystrophies research. Today is a historic day. Hope yours is a good one!
Krista
Thank you for bringing attention to igive. It is a great idea and one future for better directed funding for research. We all have a cause that is near to our heart. Best wishes to your family,
Krista