RUN, WALK OR ROLL FOR A HSP/PLS CURE

My son Walker and I, carry the gene for Hereditary Spastic Paraplegia. Unfortunately, his symptoms have shown since birth when majority of cases present in peoples 30s. He walks with an abnormal gait with AFOs (ankle-foot orthotics) to aid in relief and stability. His brain sends the wrong message to his legs and the result is spasticity in his lower limbs. It’s automatic for his muscles to feel stiff like he is always flexing. This is why he walks on his tip-toes, has poor balance and falls a lot creating constantly bruised knees. Yes this is tough, but it’s also true that it could be much, much worse.

At this point in Walkers life he doesn’t let much slow him down! He runs everywhere because it’s easier for him. Yet it’s hard on his body. I wish he would slow down sometimes, but I can’t limit the boy from being an average 3 ½ year old while he still can. All I want for him is to get the most out of life and while he can run, we will run! We’re extremely fortunate that at this point in life he can, because so many others with this condition can’t. I know, I’ve met some. Some were adults, and some were kids. It’s really, really hard knowing my son may lose his mobility as time passes and this progressive disease takes other directions.

I’ve learned a lot on this journey so far. I know there is a chance my son may end up in a wheelchair. BUT, there is also a chance his progression may not take over his life. There are tons of things that may or may not happen and as hard as it is wondering what his life will look like, only time will tell.

The great thing is that so far he can be the running, jumping, singing, flying, animal loving, smiling, laughing, silly little boy that all who know him love him for. Yes, I may be scared about the future, but I’m also excited about it. Life is a wild ride that is full of surprises and we’re here to make the best of it. Please consider donating whatever is possible for you, in hopes that some day we can put an end to this disease and people like my son can live symptom free.

The event that is being held is a Walk/Run or Roll event (however you get around) at Wright Park in Tacoma on Oct. 8th. We are aiming to do at least a mile around the park, but as is true with the donation, we will all do whatever is possible for ourselves. This is the first time I have done anything like this so personally, I’m really excited to be a part of something that matters so far beyond me. Any contribution can make a difference., Please consider joining us as we aim for a future where Hereditary Spastic Paraplegia has a cure.