Tomos was born with Spina Bifida Myelomeningocele which affects 1 in every 2000 babies. This might not seem very rare, but when you consider that 9 out of 10 mothers choose to end their pregnancies at 20 weeks, when it is usually diagnosed, consequently there are not many children living with the condition.
Tomos is the youngest of 4 children, he has a very happy personality and a great sense of humour and loves spending time with his siblings and especially playing Fifa with his oldest brother. A big Manchester United fan, Tomos recently met Rio Ferdinand and told him that his dream was to be United’s next goal keeper. He loves to go horse riding, play wheelchair rugby, bake with his Mum and has just learnt to swim 5m unaided….a fact he is very proud of!
Although unable to walk or stand, Tomos works hard to keep up with his peers at school. There are highs and lows as having hydrocephalus can make keeping up with school work tricky at times, and it’s not always easy to join in football games in the playground, but his determination makes him keep on trying.
Spina Bifida literally means ‘’split spine” and is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. No one is certain what causes the condition. For Tomos this means paralysis from the waist down, double incontinence and Hydrocephalus which is an abnormal accumulation of cerebrospinal fluid around the brain.
As a consequence of his condition Tomos has had to have a lot of surgeries, frequent hospital appointments and daily physio, but he doesn't let it stand in the way of doing all the normal things an 8 year old boy likes to do.
To learn more about Spina Bifida and Hydrocephalus click here.
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