We are a NSW family with 3 beautiful sons, and our youngest son Tait suffers from Spinal Muscular Atrophy, a devastating genetic disease and the most severe form of degenerative motor neuron diseases.
Acquired at birth, SMA causes the nerves of the spinal cord to weaken and deteriorate, and eventually die completely. This causes the entire body to degenerate, preventing basic functions like walking, eating, breathing, and general arm and body movement. Simply speaking, the body will slowly shut down until it cannot function at all. SMA is terminal and there is no known cure.
We have already lost one child to SMA. Our only daughter (second-youngest child) Brigitte passed away when she was just 5 years old. We found out that she was a sufferer when she began to lose the ability to walk at just 3 years old, and at the same time received the news that Tait would also carry the same terminal illness- only months before he was born.
Tait is now 17 years old. He has been in a wheelchair from a very young age, and requires the assistance of carers every single day as he cannot get out of bed, use the bathroom, get dressed or shower himself. He is however rapidly losing function of his arms, unable to write and losing the strength to eat regularly. This has affected his health and he now has to receive the nutrients he needs through a dietary tube surgically inserted into his stomach.
Tait has also lost the strength to cough normally to remove any fluid from his chest. This means that even a very mild cold or flu can turn out to be fatal, as fluid caused by a common flu will inevitably lead to pneumonia. This has already happened to Tait several months ago, needing emergency hospital treatment to mechanically remove the fluid from his lungs before it become fatal, as it had once before with our Brigitte.
Doctors gave him until the age of 14, but despite this he is doing quite well and battling very hard to maintain a happy and relatively normal 17-year-old’s lifestyle. Tait has taken up the sport Boccia, a disability sport very similar to Bocce and targeted towards those in wheelchairs and suffering from movement dysfunction in their limbs. Tait has found a great love for the game, playing with the Boccia Australia team is and fast-tracked to representing Australia in the Paralympic Games.
Getting financial aid to support Tait and provide him with the equipment he needs has been extremely difficult. Government support for disabilities has provided us with very little. So much needs to be provided for him to live and yet there are so little recourses.
Until recently, we had to get up every few hours throughout the night to turn Tait over in bed so that he could breathe properly, as he is unable to turn himself. We finally received a small amount of government funding to assist in buying an electronic bed to do this for him. The list of expenses goes on:
Car modifications to transport a wheelchair
Full bathroom renovation to allow for a shower flush with the floor
Widening door frames
And now the list of costs continues and Tait continues to weaken. He now needs further modifications to his wheelchair to assist with the declining function of his arms, a seat raise for his wheelchair, and most importantly a coughing aid machine. This is absolutely crucial for us to maintain Tait’s health, and keeping him with us for as long as possible. To have this machine would mean a common cold or flu would no longer be life threatening, as Tait can remove any fluid from his lungs before it becomes harmful. The government will not assist with any of these costs, which are around $50,000. We are appealing to you now to help us give Tait the chance he deserves at a longer and happier life, and achieving his dreams of making it to the Rio Paralympic Games. It is an absolute struggle to lose one child and see another suffer from this, and all we can do is try and make life better for him. Thank you so much for taking the time to read our story, and any donation would be invaluable to us!