Job Reference: 44 ER X Expires: 4th December 2017
My son is 12 years old, and has been diagnosed with Cockayne Syndrome (type 1). Cockayne is a progressive condition and life expectancy for type 1 is early twenties or thirties. As Mohamed gets older, his condition will deteriorate and his body will undergo a pathological aging process and neurological deterioration. Mohamed will experience thinning of his skin and hair. Mohamed is also diagnosed with Equinus deformity and spasticity with tremors. This results in progressive limb contractions and scoliosis (curvature of the spine). Mohamed is diagnosed with hearing loss and he wears hearing aids in both ears. Mohamed is not able to pick up speech with his hearing aids. Mohamed is unable to see with any clarity unless he wears his glasses. Mohamed wears specialist footwear and splints to give his ankles support. Mohamed requires two adults, one on either side, to give him the stability to walk safely. Mohamed is fed predominantly through his gastrostomy tube/mickey button. Mohamed is described by both family members and school staff as a friendly and happy child. He loves the company of adults and enjoys playing with his siblings.
To transport Mohamed and his family to his many hospital/clinic appointments. Mohamed attends Gloucester Royal Hospital, Cheltenham Hospital and the John Radcliffe and Nuffield Orthopaedic Hospital in Oxford. Mohamed's parents do not drive and are currently attending all his appointments by bus or train.
To take on a social activity once or twice a week; either swimming or Hop, Skip and Jump activity centre.
Driver with use of a car and full driving license.
2 hours for social activities and up to 10 hours for care and support including attending medical appointments. ; would need to be very flexible.