Sponsor James
Child’s Name: James T
Child’s Condition: Prune Belly Syndrome
Attended Heel & Toe Since: October 2014
Megacystis was noticed at 12 weeks gestation, and was also born with talipes. Has had several assessments/tests but all have come back inconclusive.
Receives: Physio, SALT and Conductive Education
James’s Story
James has no movement in his lower limbs and is very weak in his abdominal area and neck. James is unable to eat, toilet, and talk at the moment. James is not expected to stand or walk independently. He requires daily stretches on his legs, and he works on sitting without propping so that he can play with objects and sit. He also works on high kneeling and four point kneeling to build up his strength in his core and shoulders.
Before Heel and Toe James couldn’t roll over, couldn’t sit and had very little strength. He is now doing activities that it wasn’t thought he would ever be able to do when he started. James is stronger and able to position himself better for play and activities, and he has more confidence and is willing to try new equipment. James has started sitting with and without propping, he has started standing with gaiters using ladders at first then just against a wall using his arm as support, and is now walking using parallel bars and walking frame.
James tries things at Heel and Toe that he possibly wouldn’t think to do at home. James loves his therapists and enjoys playing with them and with the other children in the waiting area. Outside of Heel and Toe James also goes to nursery school and a play group for children with additional needs. He enjoys playing with cars and animals; taking the dog for walks in his wheelchair; and standing. His parents (and James’) aim is that he will be able to independently self-propel in his wheelchair and to pull himself up to move from chair to wheelchair. They would love James to stand and walk with minimal support.
James has such a cheeky personality, he loves to wind up his mammy and daddy and play with his doggy. James loves to laugh and due to his weakened facial muscles this is hard for him. He plays with his cousin all the time and loves Micky Mouse and Bing. James is so determined and he loves hitting his targets and trying to go further and further each visit.