Meet Amy. Amy has what is thought to be a very rare genetic condition – so rare that doctors have so far been unable to give a 100% diagnosis.
What they do know is that Amy has a type of neurological condition that affects her muscle control. Amy can’t walk and suffers from abnormal movements and core stability problems.
In 2010, when just 18 months old, Amy’s medical team had recommended that she be fitted with a body splint – called a Second Skin Suit. This suit would give Amy greater independence in upright positions such as standing and sitting. She’d wear it every day, allowing her muscles to work better and get stronger. It was hoped that it would also help to reduce Amy’s involuntary, abnormal movements.
Amy’s suit cost $1,960 and we were thrilled to be able to fund that suit for Amy thanks to the generosity of our wonderful I Give A Buck community and some grant funding from Australian Unity Foundation.
Amy’s skin suit literally changed her life.
For the first time ever she could sit unaided and could see a totally different perspective of the world around her. It helped her posture so much that she was able to eat food without it having to be pureed first. And she loves it! Amy had been in danger of having to have a PEG feeding tube inserted into her tummy, so this was a fantastic bonus for her.
In August 2011 Amy’s physiotherapist suggested that an iPad would be really useful for Amy to help develop her communication skills. We were only too happy to provide Amy with an iPad through our iPads for Priority Kids Program. The touch screen functionality of the iPads are ideal for children with muscle tone issues who would never be able to use a traditional keyboard. There are some absolutely terrific learning and development apps designed for children too. Have fun Amy!
September 2011 was review time for her Second Skin Suit. It had had such a huge effect on her life that we didn’t hesitate to launch a second appeal to raise the $1,990 needed for Amy’s next suit.
Amy’s improvements continued and her new body awareness helped her to move more confidently. She was now able to pull herself up to stand, not quite standing on her own, but close.
By early 2013 it was time for her 3rd suit (a suit is tailored to a child’s specific measurements, so they usually only last 12 months). This next suit had been designed to further improve her trunk and pelvis stability and control so that she could more effectively build on her sitting , standing, sit to stand and mobility skills, particularly with arm and hand use at the same time. It would also assist her to develop a higher level of independence, skills and confidence in preparation for learning and participation in the school environment. It would help Amy to develop her self-care, learning and play skills to the highest level possible.
Amy’s therapists were aiming for her to be able to “sit and do”, and “stand and do” more successfully and effectively. Amy’s mum said, “Amy is crawling everywhere. She is climbing up on furniture and getting into the cupboards like every other toddler. She uses a hart walker which she loves. It took a little while but now she can walk to our local shops in the walker, with a little guidance. When Amy wears the suit, her posture is improved greatly and I find she can concentrate for longer periods of time. When she is in the walker, the suit really supports her movement, her posture is improved, so she does not slouch and tire as quickly. The new suit I believe will support her with her standing and walking. Can you thank all the people who have supported Amy? Amy has made remarkable changes in her development. The support and contributions from people have really made a difference in my little girl’s life.”
That’s what it’s all about! Watching how we have all been able to band together to improve Amy’s life has been a fantastic journey and yep, we were able to do it again, easily raising the $1,990 needed for Amy’s 2013 suit.