ari morrison - the little legend
30 July 2015
In June of 2012 Ari, then aged 3 was on a family holiday in America when tragedy struck. Ari fell off a houseboat and drowned!
He was found and revived but has been left with severe brain damage, diagnosed as cerbral palsy level V.
As his mother, I have been completely responsible for his recovery and I try to access everything I can to further his rehabilitation with the hope of Ari regaining some skill and living as independently as possible. However, our reality is that Ari is wheelchair bound, non verbal, fed by tube and completely reliant on us for all of his needs.
Now we are 3 years post accident and in the first year Ari’s progress was excruciatingly slow. I have come to learn that his brain needed that year to recover enough to be ready for rehab and now we are seeing strides that we never thought possible.
After intermittent therapy 2 or 3 days a week, an hour here or there, we saw minimal recovery or regain of skills. It wasn’t until we accessed an intensive block through Princess Margaret Hospital that we saw a marked improvement in Ari’s cognitive and physical function.
Until now, we have only had access to rehab (at PMH) and that is only once a year.
We have now been blessed with the opportunity to work on another ‘intensive’ with our physio Triston Hunter on an amazing FES bike that was funded through the Saba Rose Button Foundation. Ari was chosen as a focus child of the Saba Rose Button Foundation for 2015 and our results have been wonderful.
This electrical stimualtion bike is an incredible piece of equipment and after only 3 sessions on it we have seen a marked improvement in Ari’s leg movements and now voluntary arm movements as well.
The Saba Rose Button Foundation has also provided us with an amazing shower trolley that has made our lives so much easier for bathing transfers.
We were told 3 years ago that Ari would be a vegetable with no recognition of who we are, would never smile or laugh or feel….
Our amazing funny Ari, who now laughs, smiles and knows exactly who we are, has had the greatest opportunity to be supported by the Saba Rose Button Foundation… We love you all so much and can’t find enough words to thank you for believing in us when others didn’t and for helping us access these amazing therapies and equipment to help Ari recover further.
X Simone (Ari’s mum)
sophie martin - the warrior princess
31 March 2015
Meet one of our focus stars, Sophie Peta Martin (AKA Sophie Peta – Warrior Princess) has a rare genetic disease known as Severe Myoclonic Epilepsy of Infancy or Dravet Syndrome. Dravet Syndrome is a catastrophic type of epilepsy which sees her hospitalised every few weeks. Sophie is also effected with a range of associated disabilities including behaviour and developmental delays, movement and balance issues due to her very low muscle tone and hyper mobile joints (dyskinetic hypotonic cerebral palsy). Chronic infections, disruption of the autonomic nervous system which regulates her body temperature and the ability to sweat and shiver.
On the gross motor function scale Sophie is classified as Level 5, which is the highest level of disability.
In spite of Sophie having special needs and many challenges, she is absolutely delightful! Sophie can be described as determined, strong, brave, loving & happy. Sophie is an absolute joy and a very special little girl.
Sophie is working hard with Triston Hunter in physiotherapy to achieve -
- sitting independently
- moving more (through using the RT300 bike, scooter board)
‘Intensive’ blocks of rehabilitation will help Sophie to achieve these goals .. Help us, help Sophie!!