HSP and Me - Team Jones

Just4Children are wanting to raise funds for essential specialised equipment and assistance for Tyler and Eryn.

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Tyler is aged 6 and Eryn 3. They live near Plymouth in Devon.

Back in 2015 Tyler was seriously behind in many of his Gross Motor skills. He couldn't jump, balance, hop or even run without falling over numerous times. We were continually told he was just delayed and that he would catch up, and that it was normal, so much so that we nearly didn't pursue it any further. Until one day we got our assessment. We took Tyler for his appointment and I will never forget that day for as long as I live. 

That appointment started the ball rolling for urgent testing. At this point the doctors thought that Tyler had a life limiting disorder. We had to sit and wait for results which would tell us if we were going to lose Tyler before he would reach age 10. Those tests came back clear thankfully, but then it was onto the next life limiting disorder tests. 

It was relentless. Finally, though, there was a light at the end of the tunnel and our Neurologist went on a whim to test for HSP. Hereditary Spastic Paraplegia is a Neurological Disorder which affects Gross Motor skills and various other body areas, and normally it will result in the person needing a wheelchair to get around. 

Just as lockdown started both Tyler and Eryn were diagnosed with HSP Type 5a. Some people ask why are we pleased they got this diagnosis. Well to us it is simple. Yes, they may have issues and their prognosis is unknown, but they are here with us, and at the moment we hopefully aren't at risk of losing them.

At present we know of 5 children and adults with 5a worldwide, 2 of them being Tyler and Eryn. Tyler has Lumbar Lordosis and also the start of Scoliosis. He still wakes in the night in a world of pain, pain that we can’t take away. He can’t sit for long periods of time and he can’t walk for long periods of time. If Tyler and Eryn catch a common cold, they lose the ability to function well, they can’t walk and their immune system is drastically compromised. 

Given all of the above we want to make sure that what life they do have is the most amazing one and that our memories as a family are amazing.

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