Rhyan Munro was a healthy baby but at 8 months old he developed influenza and was hospitalized. His mother (Mandii) had noticed that he wasn’t making the normal milestones and the Paediatrics Team noticed something wrong with his feet, they were in a pointing position, so referred him to Monash Hospital for testing. The Paediatrics team started casting on his feet but after numerous attempts this didnt help. By 14 months he was walking, but always on his toes and very tumbley. Specialists decided to look into his condition more and did more testing where they found he suffered a rare condition known as Arnold Chiara malformation. At the age of 2 years he had a decompression of the brain requiring surgery, which in turn lead to a side effect from it and we nearly lost him. He pulled through but there was still no explanation for his toe walking. More testing found a rare chromosome known as chromosome 15 duplication but Rhyans is reversed and branched, so much worse than what this usually entails (without getting too technical). This hits on the behavioural characteristics. At 4 years old he was diagnosed with ADHD and Autism. This also explains his epilepsy too, which he was diagnosed with at around 3 1/2 years. But today he is 7 and has now been diagnosed with Arnold Chiara malformation which has grown on his spinal cord and also present with a syrinx which will require intense surgery with big side effects. A very scary prospect. He is an Autistic, ADHD toe walker with epilepsy and now this new problem. He attends special school and ongoing therapy through a private occupational therapist, physio and ongoing, endless Monash appointments with neurologists and Paediatrics team. BUT he is also a loving, caring and sweet little boy with a beautiful soul. He loves being outside, organising things and anything mechanical. It is my goal to be able to get him a cubby house that he can use for years to come. His parents have had so much emotional and financial burden, but always do all they can for their little boy (as well as 3 other children). It would mean the world to them to get a cubby for Rhyan, as they just cannot afford it. If you can help in any way, spare even $1.00, it all helps, it would be greatly appreciated. Our goal is to raise around $1200. Country Cubbies in Pakenham have kindly offered to help us. Donations can be made directly to them so you can be confident this is legitimate. If you can spare anything at all, please donate to: Country Cubbies BSB 083 154 Acc No. 13725 5901 countrycubbies.au ABN 13 191 713 637 Thankyou
Posted on: Tue, 09 Sep 2014 10:36:18 +0000
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