But Angela and Phil were determined that their son would have the chance to live a happy and fulfilling life, and to be as independent as possible.
Ashton has a very rare genetic condition which has resulted in microcephaly (a smaller than average head circumference), developmental delay, cerebral palsy and low muscle strength. He is a happy little boy, and at four years old he is attending preschool, and can roll over, kneel, crawl and eat finger foods on his own – he particularly loves chocolate!
One of Angela and Phil’s dreams is to see Ashton walk “in whatever form that takes, and with whatever support devices he need. That means he can be so much more independent, and being upright is also good for his bone density and hip joints,” Angela said.
An important device to assist in this process is a customised A-frame ladder made by volunteer Allen Pidgeon from TAD’s Manning/ Great Lakes group. “This enables him to practice moving from sitting to standing, and to bear his own weight while holding on to the rungs,” Angela said.
The ladder’s rungs are made from 25mm dowel and the four sides from pine, angled off at the top to avoid a sharp edge and painted a cheerful yellow. Each set of two sides is hinged at the top and is locked open when in use by an aluminium strut which hooks over a bolt on the opposite side. When folded up in the normal way the whole unit is compact and easy to store.
“We use the ladder every day,” Angela said. “We put a stool next to it, and he stands from there. When we first started, we had to help him along quite a bit, but now we put the Wiggles on behind the frame and he’ll pull himself up of his own accord so he can see the Wiggles over the top.”
“And initially he could only stand for a second or two, but now he can stay for over a minute. He can also take a couple of steps while hanging onto the ladder – he stands up and holds on, and we move his hands and legs along. So we can see a considerable improvement in his muscle tone from that exercise.”
“He really wants to be upright, and the ladder helps with that. We have borrowed a standing frame at the moment, and he bangs on it because he likes it so much and wants to get into it. It gives him a whole different perspective on the world compared with lying down.”