Please help our family with raising enough funds to purchase a wheelchair van. Without a van, my Son 'Noah', cannot sustain functional transportation in the future with access to his wheelchair. NDIS will generally only fund wheelchair modifications for a vehicle under 5 years old/ 80 000ks. Which means we need to buy a new van which is very expensive. As a single Mum of two young children, I also cannot return to work due to Noah's medical complexities (daily physical therapy, stretches and appointments). I have had some wheelchair vehicle recommendations, that will allow a broader range of modifications because as Noah grows, he will have different wheelchairs and not all vans can adapt to all kinds of wheelchairs. Any contribution would help towards giving Noah the inclusion he deserves to be able to get to appointments and to be able to get out of the house with his family in the future. Thank you from the bottom of my heart for your generosity and blessing!

Noah's Story

After a difficult pregnancy in 2019, we were informed 6 days before Noah was born that there was something seriously wrong. Specialists informed us that it was more likely than not, that if Noah made it to birth, he wouldn't live beyond 2 hours. We were told that if he did live, he would not breathe on his own and would require 24/7 care for life, without the ability to move his limbs and may or may not have cognitive functioning. Noah was born via emergency caesarean and was resuscitated at birth. He was put on continuous oxygen. When I was able to meet him a few hours later in the NICU, they took his oxygen off when I held him for the first time and he has breathed ever since (what a miracle!). Noah's limbs were affected in that his hands were bent at the wrist and his fingers stuck straight with the inability to bend or move. His arms were floppy and had no movement. His feet were severely clubbed and stuck sideways with an inability to move his feet or toes. No one had been able to tell us if Noah will one day be able to stand, walk, sit up or use his arms and hands. We do know that with hard work and medical intervention, if he is able to do these things, it will look very different for him. We will require a power wheelchair due to Noah's inability to mobilise himself with his arms. If he is able to walk in the future, we will still need a chair for long distances and when he is tired.

Noah is now almost 2, and we have since discovered that he was born with a rare condition called 'Arthrogryposis Multiplex Congenita'. For Noah, this means that he has a lot of joint contractures which make some of his joints permanently stuck in varied degrees throughout his body. The joints he has that are effected are his; shoulders, elbows, wrists, fingers, hips, knees, feet and toes. Noah is missing muscles throughout his body, as they either didn't grow or have wasted away. The muscles Noah does have may never reach 100% capacity. This causes Noah to have low muscle tone throughout his body and affects his ability to sit, stand and move his arms, hands, fingers, feet and toes properly. Noah now mobilises himself by scooting around the house on his back by pushing off from his feet and scooting backwards. Noah has thinner bones due to his inability to weight bare. Noah's hands and fingers are unable to bend and are stuck straight. He has learnt how to swing his right arm when lying on his side in order to pick up light toys between his fingers whilst they are stuck straight. We are working very hard to help Noah to be able to sit independently, to weight bare, to stand and to hopefully one day be able to walk.

Alongside Noah's Arthrogryposis, he also had a small stroke around the time of his birth. He was also born with several conditions that affect his airway and make it a bit harder for him to breathe and eat or drink. Noah is at risk of becoming critically ill if he gets an upper respiratory condition and this has already landed us in hospital on a few occasions.

Noah also aspirates when drinking fluids without modifications, meaning the fluid can go into his lungs. We have worked really hard to get Noah to a point where he can drink his bottle safely and eat pureed foods, as Noah's muscle tone, airway malformations and other small congenital issues affect his ability to eat and drink well. Noah has also been affected by skin issues, stomach issues (including separated stomach muscles) and eye problems. Noah has a global development delay and speech delay. Noah requires regular stretches and exercises all throughout the day to maintain progress and range of motion. He has orthotics he wears day and night for his wrists/hands, feet and he has a body splint for throughout the day to help him sit upright and correct positional scoliosis.

In 21 months there have been 325 appointments for Noah and he has had an extra 49 days in hospital/clinic. Noah has an extensive team of therapists, specialists and services, 26 different ones in fact. Noah has had a number of procedures (some quite painful). Noah has also had several surgeries; surgery in his nose and throat. Noah had difficulties breathing and eating post surgery and ended up in and out of ICU, on his 1st birthday too. He also had another surgery in his legs and ICU stay at 16 months. Because of Noah's clubfeet, he has required many leg casts to straighten his legs. To straighten Noah's wrists, he has required ongoing wrist splints. Due to Noah’s limitations, he requires support with every task.

Noah is a miracle and a warrior and he adds so much value to our lives. He is determined and resilient and the most patient little person I know. He has already touched so many people's lives. He encourages me every day to be a better person and humbles those around him with his perserverance despite his obstacles. He is interested in the world around him, he watches and observes everything. He loves being outside, loves being on his swing and bobbing along to music. He has the best smile and loves his big Sister! Please help us maximise Noah's independence and inclusion by helping us purchase a vehicle that will cater for his wheelchair. Noah has alot to offer the world and his journey has just begun!