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 cant 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 cant 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 aimed to reduce and remove spasticity in the lower limbs.
1 year ago my little Jaxon’s life changed for better having SDR surgery and I can not thank every single person who helped him get there enough you will all hold a special place in my heart forever. The difference in him is amazing. He is so independent now and it’s only been a year. It truly is amazing to see him progress and without the surgery his mobility would have declined. He was starting to go backwards. He still has a long way to go but the future is looking bright for my guy.
He still requires lots and lots of physio and will do for years to come so if anyone has any fundraising ideas or is looking for ways to challenge themselves please keep Jaxon in mind to sponsor him and keep his fundraising going to help him get physio therapy regularly.
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.
Thanks so much everyone for giving my Jaxon the biggest blessing and helping him live a happy independent life.
