Help Jimmy Woodford!

Jimmy was the most beautiful baby boy I could have ever asked for. He joined his equally beautiful big sister Charlie to complete our family of four. Even subconsciously we had plans for our boy. Everything was going to plan and he was hitting all his milestones and thriving up until 11 months of age when we got the most boring “blink and you miss it” conjunctivitis and dry cough. Who could have thought such a run of the mill illness could cause such damage. Our healthy, happy boy within a month loss all his independence. He could no longer crawl, sit or even roll over. Those sweet words and everything else we had taken for granted were taken away. At his worst Jimmy’s ability to swallow was affected and he required a nasogastric tube to ensure he could receive his feeds safely. It took 7 months of invasive testing including blood tests, MRI’s, lumbar punctures and multiple general anaesthetics with blood and spinal fluids being sent overseas to Manchester, Leeds and Paris for specialised genetic testing. While we awaited a diagnosis Jimmy has relied on monthly intravenous infusions of immunoglobulin and high dose steroids have been keeping him from deteriorating further and we have been at the hospital more times than I care to count. Finally we received a diagnosis. Jimmy has Aicardi-Goutieres Syndrome, a rare genetic inflammatory disorder that usually affects the brain and skin. There are only 2 children with Jimmy’s genetic mutation in Australia with this debilitating condition. Majority of affected children experience significant physical and intellectual problems. Until recently treatments only addressed the symptoms and not the underlying cause of AGS. There is a new line of treatment that has the potential to change the prognosis and quality of life AGS sufferers. However, this new drug is expensive at $30,000 per year. On top of this Jimmy requires physiotherapy, OT and speech pathology sessions weekly to assist him to become as independent as possible. At this stage we are unsure whether he will ever crawl or walk but we are hopeful and endeavour to give him every chance possible to make this a reality.Intensive physical therapy is very expensive costing close to $30,000 a year. This is on top of Jimmy’s regular speech therapy, physiotherapy and OT sessions he requires weekly. Government funding is minimal as he doesn’t fit into the usual categories for funding because his diagnosis is so rare. We are not entitled to anything from Centrelink as he is too young to be deemed high care and even though I have been unable to work since January while caring for Jimmy we have been told we are ineligible for carer’s payment, carers allowance or family assistance. It is for this reason I have set a goal of raising $100,000 to ensure we can give Jimmy every possible opportunity to attend as many therapy sessions, aqua therapy, intensive physical therapies and anything else to ensure we have tried everything within our power to get him moving and independent. Our first goal is to get him rolling over and when we achieve that we can set our sights on sitting independently and then crawling.Thank you from the bottom of our hearts, Dan, Leisl, Charlie and Jimmy Woodford