Max and Alice were born 6 weeks prematurely and spent 3 weeks in the Special Care Baby Unit (SCBU). Soon after Max was born we realised something was wrong and within a day he was nearly at the point of organ shut-down and became very poorly. We later found out that he had suffered a hypoxic event and had suffered 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 spasticity, it remains difficult for him to cruise, get into various positions such as sitting or up on his knees and keep his feet flat on the floor without the need for splints.
Since October 2016, we have been visiting Brainwave in Warrington. This is a charity that helps children with disabilities and additional needs to reach their potential through therapy programmes devised for parents to deliver within the family home. We follow this programme alongside our private and local NHS physio to help Max build up his core strength, balance and coordination. He is making good progress with his new walker and loves to chase his sisters around. However, it still remains almost impossible for him to move around independently.
We have been researching further treatment options and believe now is the time to start fundraising for a life-changing operation known as SDR (selective dorsal rhizotomy) surgery to increase the chances of Max being able to live and walk independently. It works by removing the spasticity in the body and make it much easier to do the everyday things we take for granted. It will transform his childhood and reduce the long-term effects of cerebral palsy such as muscle shortening, deformity and a life of pain.
Unfortunately for Max, this treatment is not available on the NHS (at his current level of cerebral palsy) and so we have applied to Alder Hey, to the leading Consultant Paediatric Neurosurgeon, Miss Benedetta Pettorini, for consideration. The cost of having this life-changing surgery is £16,000 which would include the procedure and intensive rehabilitation and Physiotherapy up to 3 weeks post-op. For the time being, we are currently working hard to ensure Max can build enough strength to benefit as fully as possible from the operation. Following this, Max will need 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. We will also always need to raise money for equipment that Max needs, beyond what the NHS can provide, to ensure he has the best possible chance of independence and to make life that little bit easier. We are currently looking to buy Max his first wheelchair.
Difficulties aside, Max is a beautiful boy and melts our hearts with his infectious smile and is very chatty alongside Alice - he makes us proud every day! He loves nothing more than being with his sisters and friends and giggling and joining in. He is very determined and hopefully, with the love and support from our friends and family, he will be able to lead a fully independent life. We will try our utmost as parents to give Max the best possible chance and with a little help from our friends, we WILL succeed.
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Thanks for reading our story - we are grateful for any donations, no matter how small. If you are a U.K. Taxpayer then please GiftAid your donation!
Cath & Paul x