Max is 7 years and from Scarborough. Max and Alice were born 6 weeks prematurely and spent their first 3 weeks of life in the Special Care Baby Unit (SCBU) at Scarborough Hospital. Soon after Max was born he became very poorly and we discovered his organs had started to shut down. We later found out that he had suffered an hypoxic event (lack of oxygen) which caused PVL on his brain.
Sadly, this has left permanent damage and since Max was born he has suffered from stiffness and rigidity in his body leading to some restricted movements, problems with balance and coordination and a big delay in reaching major physical milestones such as walking. He was later diagnosed with cerebral palsy spastic diplegia.
Physiotherapy is extremely important for Max's development and early intervention is absolutely key to helping Max towards gaining good head control, core strength and a good range of mobility. However, due to the combination of low muscle tone and un-coordination, it remains difficult for him to stand up independently, stepping without the need for a walker or get into various positions such as being up on his knees and keeping his feet flat on the floor without the need for splints.
Max recently had a complex neurological procedure at Alder Hey, known as SDR (selective dorsal rhizotomy) surgery, to increase the chances of him being able to live and move independently. Following this, Max needs intensive physiotherapy for 3 years post-operatively which includes private physio sessions, hydrotherapy and horse riding which we have estimated the costs at being approximately £10,000 per year.
Sadly, but unsurprisingly very little of this is provided through the NHS. We will also always need to raise money for equipment around the home that Max needs to give him as much independence as possible.
In spite of this, Max is a very fun loving little boy and he loves nothing more than being with sisters, laughing and joking and chasing round after them.
Thank you for reading our story
Cath & Paul xx
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