Announcing the SBA 2020 Campaign!

For quite a while we've been wanting to start a fundraiser to benefit Spina Bifida (SB).  Thanks to COVID-19, our 2020 St Jude campaign was postponed (really just extended to 2021), so we decided to go ahead and start something small for the SB community now.

The Spina Bifida Association (SBA) holds a "Walk-N-Roll" fundraising event each year in October, Spina Bifida Awareness month. However, the North Texas Chapter held their "virtual" Walk-N-Roll on September 12th. This is an important date for Legs Mis President, Jordan, and it seemed all the more appropriate to kick off a fundraiser for SBA. See more below from Jordan.

Two years ago today (September 12th, 2018) my then-2-year-old son underwent a major spinal surgery to remove the last bits of a rare form of cancer. The surgery was declared a resounding success and he continues to be cancer-free today. However, we soon discovered that the surgery had left him with life-altering health conditions, including the loss of bladder and bowel control.

He was still in diapers at that age, but his classmates were soon moving out of them, and we didn't want him to be any different. Aside from this social impact, the constant leaking itself was a major problem, leading to extreme discomfort for him and sometimes agony. There were times when his diaper rash was so bad it looked like blistered sunburn.

We were going crazy trying to figure out how he would have a normal life. Our doctors kept telling us to be patient because diapers were still appropriate at his age. But then we discovered a Facebook group: Bowel Management for Spina Bifida. We had found "our people". Thank you God for the Spina Bifida community.

It has been a long two years, but with the help of the SB community and info provided by the few "bowel management" programs out there (there are very few in the US), our son is now in underwear and stays dry and clean 95% of the time.

So today, in honor of our "Plus 2" (the 2 bonus years we've had with our son post-cancer), I would like to give back in the way I do best: running a campaign of fundraising and outreach for Spina Bifida. And yes, I will be running. Will you join me?