#Steps4BlairBear Virtual 5k
About the Campaign
Many of you know our beautiful daughter Blair. Blair has always had issues meeting her gross motor milestones, but we never knew why. Now, at 2.5, Blair is not yet able to stand independently or to walk. Recently, after 1.5 years of endless doctors, therapists, and tests, searching for answers, we got our answer.
Blair has an extremely rare genetic disorder called hereditary spastic paraplegia (HSP). Her case is “de novo,” due to a mutation in her genes. HSP is a progressive disorder, meaning degeneration will occur over time. Blair may never walk unassisted, and even if she does that ability may be lost and it is likely she will end up in a wheelchair. Instances of her mutation have also resulted in the loss of upper body function and inability to speak. As you can see this is a heartbreaking diagnosis for our sweet, smart, funny Blair Bear.
As of now there is no cure or treatment for this extremely rare disease, but genetic sciences are moving forward by leaps and bounds and there are scientists studying HSP and looking for a cure. It is even possible that advances made studying HSP could be applied to cure or treat other genetic diseases. Blair is only 2.5, there is a chance that there could be something that could help her in her lifetime. As Blair’s Mom I am committed to doing anything and everything I can possibly do. I am not a scientist, and I myself cannot find a cure, but this is where running for a cause and all of our amazing friends and family can play a role.
Since HSP is a rare disease there is not nearly as much funding for research as there is for other diseases.
We need your help to raise funds to find a cure. I am planning a virtual 5K in Blair’s honor to try to raise as much as I can for the Spastic Paraplegia Foundation. There are two ways you can help.
1) Donate to our team (Team Blair Bear)- We plan to run the 5K as a family.
2) AN EVEN BETTER OPTION:
Form your own 5k team, run the virtual 5k, (wherever you live because of COVID constraints) and ask your friends and family to donate to your team. You can create a team on this website and send the link to friends and family.
The 5K can be run anytime between October 15 and December 1 and we encourage you to post pictures of yourselves and your families running (or walking!) at #Steps4Blairbear.
We cannot take for granted our ability to walk or run. Get out there and enjoy the beautiful Fall weather and take some steps on Blair’s behalf. Thank you with all of our heart and please write or call me if you have any questions whatsoever. See below for some additional information about HSP and the Spastic Paraplegia Foundation.
Stephanie, Chris, Blair, and Quinn