Nate was born on 24 July 2006 and at just a few days of age he started having seizures down one side of his body. After exhaustive testing, Nate was diagnosed with Lissencephaly – a condition which leaves children with severe neurological impairment.
Due to the severity of Nate’s condition, he will not ever have the ability to walk, talk or eat independently. He has uncontrolled seizures 24 hours a day, is fed via a PEG tube through his abdomen and requires constant care – provided by his wonderful mum.
Nate also has hip dysplasia which can make him very uncomfortable during the night. He wakes often and needs to be rolled back over onto his side to allow him to fall back to sleep. The constant waking and its associated feelings of sleep deprivation are of great concern for both Nate and for his mum.
In mid 2010 we raised $4,800 to buy Nate a Jenx Dreama Sleep System (a customisable configurable mattress system) that will provide excellent postural support for Nate, keeping him in the correct, comfortable position throughout the night. This, and some well-deserved uninterrupted nights of sleep, is vital for Nate’s well-being – and that of his mum too.
Update:In late 2010 $3,480 gap funding was raised to facilitate the purchase of a much needed paediatric wheelchair for Nate – ensuring that he could sit in the comfort that he deserved rather than in the discomfort of an ordinary stroller that worsens his hip dyplasia.
Update: In early 2011 Nate’s story again hit the headlines and a campaign was launched to raise the funds need to buy the family a vehicle that could be modified to be wheelchair compliant – and to pay for that modification – with a total cost of approximately $60,000. Two brothers, who wish to remain anonymous, rallied all their contacts to donate and the $60,000 was reached in little over a month! What an amazing achievement. With this money we were able to spend $19,000 on a suitable vehicle and $25,050 on a conversion in May 2011. That same month $492 of the remaining funds was able to be spent on a supply of special nappies for Nate from the Royal Children’s Hospital.
In June 2011 we were able to pay $650 for some modifications to the Bingo Wheelchair that we bought for Nate the previous year. As Nate grows, and his needs change, modifications to existing equipment become necessary – and they’re not inexpensive. It is so difficult for families that don’t have support.
In August 2011 we were able to pay $4,500 for a very special Jenx Junior Chair and another $347 for more nappies.
In January 2012 we funded another $720 for nappies.
For more info on Lissencephaly: http://en.wikipedia.org/wiki/Lissencephaly