Harvey’s SDR Journey
Harvey is 3 from Bolton. He has been accepted for SDR surgery which hopefully will help him to gain mobility. Money will be needed for physiotherapy after the surgery for several years.
Harvey was born at 39 weeks with no complications. As a family we thought he was developing normally but at 9 months old we realised something was different. His legs seemed stiffer than normal, he would not sit up unaided, he could not crawl and was not attempting to either. At a 9 month review we were told boys can be slower. However, a new health visitor when Harvey was 13 months old told us his progression was a concern, and we finally started receiving help.
We were referred to a paediatrician and was told he would need a series off tests. MRI, blood and urine tests all came back clear. Harvey was referred to genetics and was also told that it showed no genetic condition.
We started to look into different treatments for him and in January as a family we self referred to Alder Hey for an assessment on potentially life changing surgery called SDR. More information can be found here
We were worried as Harvey did not have a formal diagnosis of cerebral palsy at the time, and we did not know if the surgery was possible as the criteria is quite strict for not only NHS but private patients too. Thankfully Harvey was assessed to be grade 3 and it was confirmed the surgery could go ahead.
The operation is only half of his journey. To make the surgery more off a success we need to provide as much physiotherapy afterwards. This is something that the NHS can not provide and with one physiotherapy session costing from £50+ for an hour costs will run high. This is why we are fundraising for Just4Children.
At the moment Harvey struggles with simple things like daily care. He also struggles with his Kaye walker as he tires very easily.
This operation will release the spasticity in his legs allowing him to gain freedom. Daily life and care needs will become easier as a family and hopefully with the intense physiotherapy Harvey may become more free in his Kaye walker on may even potentially take his first independent steps.