Their little boy, Joshua, turned one in January. Around this time Belinda and Jason took Joshua to a neurologist as he had not reached his gross motor milestones. After a series of tests Joshua was diagnosed with Spinal Muscular Atrophy Type 2.
What this autosomal recessive condition means is that Joshua’s nerves don’t transmit messages to his muscles so his mobility is very much limited.
Belinda and Jason have been told that Joshua’s condition is degenerative but if anything, they notice Joshua has improved since his diagnosis.
Belinda reports he seems to be getting stronger and, although the doctors say that Joshua will never walk, he now can raise his arms above his head and keep them there for quite a while.
Joshua speaks very well for his 22 months and is quite adept at getting his message across whether it is to go outside to play or to ask for Hi-5 to be put on the television while he uses the standing frame that TAD built for him.
A determined, happy and very outgoing child, Joshua has a beautiful relationship with his older sister, Caitlin.
As Belinda says, “Caitlin wants to look after him all the time. When she is not there he misses her terribly and will ask for her constantly.”
TAD made a custom seat insert for Joshua which can be moved from chair to chair. For safety, it has a seat belt and straps on to the chair it is placed on.
The seat insert lets him sit at the outdoor table with the family. There he can paint, play with toys and share a meal with his family. His fi ne motor skills are very good and there is nothing Joshua likes more than sitting down with his sister to make things with his Play-Doh.
Belinda has nothing but praise for the Occupational Therapists Sue Watson from Northcott and Helena Young from the Children’s Hospital who alerted Belinda and Jason to the various equipment that may be of help to Joshua. It was Helena that put Belinda in touch with TAD to get Joshua the mobility support he needed.
At home it is the special motorised trike that TAD has customised for Joshua which makes all the difference to his confidence.
“Joshua loves his ‘bike.’ He puts on his helmet and rides it all around the back deck and down the ramp his grandfather built to the backyard.” Belinda says.
Rolf Edler, a volunteer with TAD, attached a bucket seat with seat belt to the motorised trike and moved the foot control to the handle bars for easier access.
The motor control was also modified to give a soft start and stop, so Joshua wouldn’t fall off suddenly. Rolf put a special switch at the back of the trike so that Joshua’s parents can moderate its speed.
Belinda appreciates the speed control as Joshua is still only learning to steer, so by having it set to the minimum speed accidents are less likely to happen.
Rolf was thrilled to hear that the trike had been such a huge success.
“It is wonderful to hear how our jobs turn out and knowing that what I’ve done means that he can get to follow his mum around.”
Joshua’s parents are not too sure what the future holds for him. There will be the physical challenges of having to lift him as he grows bigger. At the moment they are also waiting for a wheelchair for Joshua, to increase his independence, as he starts to grow.
Belinda describes herself and Jason as down to earth people. As health professionals they are used to approaching challenges from a practical standpoint. What has happened to Joshua, according to Belinda, is just one of those things. They just get on with life, grateful for the help that TAD has given them and “just do what we have to do”.
