Help make a cure possible so the battle with HSP can end!

Sami and I have a 5 year old HSP WARRIOR named Walker. His battle is one that he has dealt with since birth. He has never known what it is like to walk without spasticity. Due to his abnormal gate, we took the doctors advice and started some testing. He was given an early diagnosis of Cerebral Palsy that was changed only months later to Hereditary Spastic Paraplegia. After a call with a genetic counselor, we learned he will always walk differently and possibly lose the ability to walk all together at some point in his life.

His specific diagnosis of SPG-4 is a variant that comes with problems the average person will never know. His brain sends the wrong messages to his legs causing his muscles to contract constantly. This causes damage over time and in just 3 years Walker already needs relief.

After enough debate, the pros seem to outweigh the cons and surgery was scheduled. With a few changes along the way adjustments were made as needed and we made it to the recovery phase. Recovery from bone rotations, muscle lengthening, and muscle transfers, all done at the same time, became a new type of challenge. It has been tough, but the result so far has decreased muscle tone, increased flexibility, and increased range of motion. All wonderful things which is already making a difference in Walker’s life. However, our main goal was to erase his pain, and it is too soon to tell if we accomplished that.

He has a lot of work ahead of him to rebuild his muscles, but we can gladly say everything is looking up. We are excited for the future as we think more things will be possible than ever before, but we know that, that won’t always be the case. This is not a fix all, end all, once and done solution. Surgery does not change spasticity. The progression of the disease will cause complications again. We don’t know exactly how, or when, but sadly, this is not the end.

The hope is that the surgeries allow him to have the childhood he desires without much restriction. No child should have to deal with pain and discomfort in their daily lives for reasons unknown, but it happens, and it is happening to Walker.

This is why this 5k means so much to us. We will continue the Run, Walk or Roll, 5K annually to help the effort towards a cure. We didn’t think surgery would be on the table at only 5 years of age, but that is the unpredictability of rare disease. We don’t always know what’s next but no matter what, we know we will fight. For now we use wheelchairs, walkers, and crutches until Walker has his strength back, and hopefully he doesn’t pick them up again for a long time.

We know this will be a lifelong roller coaster. That is why we dream about the possibility that walking is no longer difficult, balance is not compromised, injuries are no longer a daily scare, surgeries are not needed, and pain doesn’t exist. A cure truly could mean a different life for Walker! Abilities he has now he won’t likely have in the future. But a cure, before too much damage, could change that!

A cure doesn’t happen without a lot of effort and there are a lot of people across the world putting in the effort. But they can only do so much when funding isn’t available and this year funding was cut by for cancer/rare disease research. So we need help now more than ever.

We know life is full of surprises. HSP was one of them. We would love it if you surprised us and joined us in Walker’s 5K! Please help us raise awareness/finances for HSP to halt symptoms, discover a cure, and create a better life for those in desperate need. Every donation matters to those affected by HSP. Every donation gives hope. Please consider donating to this cause to give a chance to people, like my son, to live their lives fulfilling all their desires.

Walker is one of many. Many people need you!