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Thomas' Story

Thomas, who is one of three boys in a family of five from Cairns, has a rare degenerative disorder known as Sanfilippo Disease.

Every day the human body undergoes natural cell renewal, where old cells die and new ones take their place. Sanfilippo Disease occurs when the body is unable to get rid of the old cells, resulting in cell accumulation. There are three types of Sanfilippo Disease, and Thomas has type 3, which means that the buildup of cells for him, occurs in his brain. The result of this, is what presents as Juvenile Alzheimer’s, which Thomas has had since he was four years old.

Now, at almost 20 years old, after a slow decline Thomas has lost the ability of his legs and hands. He doesn’t speak or feed himself and needs 24-hour care, which is provided by his parents most of the time.

“When he was a little kid he could do lots of stuff, he could walk and he could talk a little bit, he loved the computer, just doing what all other little kids could do. As he got a little bit older, obviously what we thought were behavioral issues started to set in, and then by the time he was 7 or 8 years old, he lost the ability to use the toilet, he couldn’t sit still as much, and then he lost ability in his hands.” – Rose, Mum

As Thomas got older and his care requirements increased, his parents were finding it increasingly difficult to keep up with what he needed, whilst also looking after themselves. The NDIS has offered the family some reprieve for eight hours of carer support during the day, however as his parents they are still his primary carers, especially on weekends and at night times.

“We don’t get a break, but that’s the way it is. We’re okay to do it, but we can’t sustain it for the next however many years. We’re late 50’s now, we’re not spring chickens and if we do get injured it takes ages to get over it. Especially if we still have to handle him throughout the day and monitor him during the night, so we have broken sleep every night.” – Rose, Mum

This family pressure has only increased since Thomas graduated school in 2018. He used to go to school five days a week, and receive care and stimulation through the education system, but for the last two years Thomas has been stuck at home for majority of the day. As a young man, he loved going out and having people around him. Up until last year, the family were able to sit him in the back of their car and take him out occasionally, however as his reliance for his wheelchair increased, this was no longer a viable option for the family. It was becoming too uncomfortable for Thomas, and too dangerous for his parents, who have both suffered from back injuries in the last 12 months.

“The physical manual handling to get him in and out of the car to go 10 minutes up the road was too much. We would prefer not to do it and consequently the poor kid was at home for the majority of the time. He was bored out of his brain and we didn’t know what else to do with him.” – Rose, Mum

With an At Home Care Grant from Youngcare, Rose and the family were able to purchase a Kia Carnival for Thomas, which has now become his car. After discussing other possible items to apply for, Rose decided that the car was the main thing that was going to change things for Thomas. Having access to the car has now changed the whole family’s life.

“Once we got the car it opened up our world really. We feel that he understands that it’s his car, and he loves going out in it. It’s an absolute God send, because now getting into the vehicle is easy. We used to have to pull the chair apart and we would hurt ourselves by doing that. Now we wheel him straight in, it’s so much more convenient and works well for everyone, especially Thomas.” – Rose, Mum

Having the car has not only made getting Thomas out into the community easier, but has also helped with attending appointments and being able to have more freedom as a family. The car, which is able to be driven by his parents, siblings and carers means that Thomas is able to be taken out multiple times during the week to different outings. He now has some of the freedom that every young man desires, and the risk of carer injury and strain on his parents has decreased.

To the people who have funded the grants, Rose is incredibly grateful.

“The people who are donating money to stuff like this are really special people. There’s a government that has the NDIS, which mainly covers his supports and then there is you, people who come up with this minute amount of money that makes such a big difference, it’s incredible. I have to say a heartfelt thanks, because it’s made a big difference.” – Rose, Mum

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