Jaxon is 5 years old and from Liverpool. He was born full term with no problems or complications; he was hitting all milestones until he started pulling to stand up. Jaxon’s feet just couldn’t’ hold his weight and he was really struggling. After a long battle of months and months of being told that Jaxon was fine and that I was worrying too much or he was just a lazy little boy finally he was referred to Alder Hey children’ hospital for an MRI scan. This determined that Jaxon has some damage to his brain (PVL) and was diagnosed with spastic diplegia cerebral palsy.
We then went for a second opinion to Leeds hospital who suggested the mri scan was clear and Jaxon may have a genetic condition. We went back to Alder Hey who agreed to do genetic testing, test results actually confirmed that Jaxon has Hereditary Spastic Paraplegia HSP type FAR1. This type of HSP acts and presents almost the same as spastic diplagia cerebral palsy.
Jaxon can’t stand or walk independently and struggles with many other daily tasks. At the moment he uses a k-walker to get around. As he grows bigger, he is becoming weaker and now struggling to hold his weight and will eventually lose more and more mobility as he can’t gain strength with being so restricted with spasticity. Although he does daily exercises and stretching programmes the spasticity is becoming more evident and making him more uncomfortable, without this procedure this will not go away.
SDR or Selective Dorsal Rhizotomy is a surgical procedure that aims to reduce and remove spasticity in the lower limbs.
Jaxon has other problems such as global development delay and bilateral cataracts which he has now had surgery on both eyes to remove the cataracts and replace with prosthetic lenses and now wears bifocal glasses.
Although Jaxon faces daily challenges with his mobility and delays, he has a smile on his face every single day and battles on like a true warrior. He is a very happy little boy who is loved by everyone who meets him, he has a big brother, loads of friends and cousins who he would love to be more involved with.
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