Adam is a 12 year old boy who has a rare form of Epilepsy, Dravet Syndrome. People who have this rare form of Epilepsy do not out grow this, and it effects every aspect of their daily living. These conditions include:
Behavioural and developmental delays
- movement and balance issues
- orthopedic conditions
- delayed language and speech issues
- growth and nutrition issues
- sleeping difficulties
- chronic infections
- sensory integration disorders
- disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Adam attends the Ability Care Children’s respite Programs, Vacation Care and Camp programs. As Adam is Peg Fed, and has high Seizure activity, Ability Care staff are trained to support Adam with all his support requirements. Adam requires close monitoring, supervision and constant high support as Adam could have a seizure at any time. Staff sleep close by when Adam is in Respite so they can hear any seizures which Adam may have during the night.
Recently Adam had a fall which caused a hair line fracture in his hip. Adam then went on to have two big seizures which caused the bone to fracture either further. This resulted Adam requiring surgery and having two screws placed into his hip.
Adam is making a quick recovery, and this may well be that he was very excited to meet his favourite soccer team, Manchester United last weekend when they played in Sydney. If Adam wasn’t strong enough after the surgery, he may have missed out on this once in a life time experience.
Adam loves Soccer. His Mum works with the Brisbane Roar as a Community Football Coordinator, and Adam has grown up with the spirit of Soccer in the home. Adam’s Neurologist suggested that Rozanne (Mum) apply to the Starlight Foundation for Adam to make a wish. The Starlight Foundation’s Wish Volunteers and Adam’s family came together to make Adam’s dream come true.
The Starlight Foundation payed for Adam to not only meet the Manchester United Soccer Team, but to watch them train, visits Taronga Zoo and the Circus Cirqua. All this was payed for including the Accommodation by the Starlight Foundation.
Unfortunately Adam came down with a temperature and as a result experienced some seizures. This prevented him from attending the training match and the Circus. Adam spent some time back in his hotel room. As Adam requires constant support, and was still in a wheel chair from his recent surgery, Ability Care payed for a support worker to travel along with the family for extra support, and to provide the family with a well-deserved rest of their own.
Ability Care would like to wish Adam a speedy recovery.
For more information on Dravet Syndrome you can visit:
http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome#sthash.Fg3T8WzQ.dpuf
