Dylan is 3 years old and lives in Upminster, Essex. He is a twin and was born prematurely at 30 weeks. A routine head scan when he was a week old showed what the doctors thought were small bleeds on the brain but these continued to get bigger as the weeks went on. Dylan had an MRI scan before being discharged from NICU and that is when we received the awful news. He was diagnosed with Periventricular Leukomalacia (PVL). Dylan was given a very bleak outlook for his future. The doctors were right with some of their expectations but not with others.

Dylan is a fighter and a happy little boy with the best smile and contagious laugh. He has since been diagnosed with spastic quadraplegic cerebral palsy and cerebral vision impairment (CVI). He is also registered as severely sight impaired, has global developmental delay and is non verbal. At 10 months old Dylan was also diagnosed with infantile spasms, a type of epilepsy. He is currently seizure free and medication free.

His future is unknown and he will not walk unaided.

We are grateful to the NHS and all the professionals involved helping Dylan but we know that NHS services are very stretched and can not provide all the care that Dylan needs. NHS only offers Dylan physio one hour every few months and a block of one hour session a week for 4 weeks once a year. Then it is up to us as his parents to do the exercises at home. We are and always have been committed to doing the exercises that we have been set by his physiotherapists. We try our best but we are not specialists and do not have the skills or equipment that physios do.

Dylan cannot sit unaided, crawl or get around on his own. He is carried or pushed in his wheelchair. All the money raised will help us provide as much physio, equipment and alternative therapies for as long as possible. The longer we can keep these therapies going the more Dylan is more likely to be able to become independent and reach his full potential.

Thank you

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