Dylan’s Beacon of Hope

Just4Children are fundraising for Dylan to access physiotherapy and other therapies and specialist equipment like a Mollii Suit to help him gain independence and to reach his potential.
£170
Total raised
1%
£10,000.00
Target
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Dylan’s Beacon of Hope

Just4Children are fundraising for Dylan to access physiotherapy and other therapies and specialist equipment like a Mollii Suit to help him gain independence and to reach his potential.

Dylan is aged 17 from Bridgend. He was born prematurely at 27 weeks, just under 1kg and NICU in hospital was his residence for 3 months, a month being in incubator, a surfactant given to help develop and close his lungs, 3 blood transfusions and an episodes of apnoea.

Keeping hope and see him fighting every day was encouraging. By 2 months he developed well as a growing baby, gaining weight gradually as he was out of fed tube and his senses became more functional. Three months on and he was out of oxygen, gradually getting used to natural air environment and he tolerated well. Still tiny, Doctors and nurses constantly monitoring his stats, a full check up and established weigh gain at which Doctors were happy to discharge him. Follow up outpatient clinic appointment continued.

During his 5 months milestone, his Paediatric Consultant delivered the diagnosis, that Dylan had cerebral palsy. Shocked and confused we were, upsetting and emotional that day was.

The comforting doctor explained Cerebral Palsy and very reassuring that she would provide support and early interventions to help us and Dylan in every possible way. NHS physiotherapists, OT, Neurosurgeon and Orthopaedic surgeon have been involved to monitor his development.

As Dylan progressed in life, he became prone to spasticity and chronic startle reflux. The frustration and losing his confidence was heart breaking. We relied on regular physiotherapy with the OT assistance which have continued to this day.

However, recently the NHS physiotherapy and OT discharged Dylan from their department. I have considered private physiotherapy for a few sessions just to stimulate his muscles and nerves and was able to use an adaptive cross trainer machine which he enjoyed but unfortunately it is too costly. I have put him in for Aquatic Therapy and is now in a waiting list, hopefully in time for me to save up.

Searching for specialist equipment, therapy and other mobility aids is never ending, while the price is extortionate.

We learned a lot about Cerebral Palsy and are determined to do the best we can for our perfect little boy, now a young man with big dreams. I keep faith in him and our hope is that he could one day live independently and enjoy life.

Our heartfelt thanks to everyone.

Kind regards,

Mom and Dylan

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