We launched appeal for Noach in August 2012, here is his story:
2 year old Noah is terminally ill and is the youngest of 4 siblings. Noah’s older sister died 4 years ago at the age of 4 ½ from the same condition – Gene Deletion Syndrome. This is truly a parent’s worst nightmare.
Struggling to come to terms with this latest diagnosis, Noah’s family is determined to provide as much love, comfort and joy to him as possible.
Since the age of 9 months, Noah’s health and skills have been regressing. He has gone from sitting independently, pushing around his trolley, babbling and playing with toys, to now having little muscle control, limited ability to move his arms and legs and reduced trunk and head control. He is fed through a tube every four hours and spends much of his day lying down as he requires maximal support for sitting.
His joyful babbling and ability to speak have been lost.
Due to the loss of his muscle control, he has also lost the ability to play with his toys.
Noah likes to be carried most of the day in his Mother’s arms, and when he’s not in her arms he needs to be rocked in his pram to be comforted.
Sleeping in his parent’s bed each night, Noah’s Mum and Dad find themselves struggling with exhaustion most days, with Dad needing to then attend his job as a mechanic and Mum needing to look after Noah and his two older siblings (aged 10 and 3).
Due to Noah’s deteriorating condition he will be needing several items of equipment, but his parents and his Occupational Therapist have identified what they believe is currently one of the most needed – a special indoor swing. Being rocked is an activity that Noah finds calming and the swing would allow his family to provide this opportunity readily and safely.
That swing would not only bring little Noah the joy of movement but would also allow his Mum to have some rest. Constantly holding him was beginning to impact on her physical and mental health.
This disability specific swing has modified seating, head rest and leg supports, ensuring that Noah is safe and fully supported while he’s enjoying his ride.
As with most pieces of disability equipment, the cost of such a swing is high - out of reach of Noah’s family. And that’s where we came in. This appeal sought to raise the $2,386 needed for the swing.
And is sure did that! Noah’s Appeal was finished in record time – it took just 8 hours! Thank you so much to everyone who donated.
If you didn’t get the chance but would like to help our foundation you can make a general donation here http://www.igiveabuck.org.au/donate/donations/current-appeals/general-donation/ and you can join our mailing list to hear about children who may need you help in the future – the sign-up form is on our home page.
Please Note: For privacy reasons the name of this child has been changed and a stock photograph used. His family asked us to run a private appeal and we have gladly done so.