My name is Joshua Groom, I am 24 years old and I have a disability called Tuberous Sclerosis. I live with Clare and Toby who are my Host Mum and Dad in Two Rocks and will start to live with Donna and Rob in Tapping in June. I can't wait to live with my new Host Mum and Dad. I will be living with each family week on week off. I have a wonderful supportive caring team, also known as the J-Team.
The photos are of my Host Mum and Dad's bathroom in Two Rocks. Clare and Toby can't shower me in this bathroom as it is really dangerous for me to step into the bath as I am very wobbly on my feet. Instead they shower me in the
ir en suite which is very small and can't fit three people in it which then in turn becomes dangerous for me and my carer's (they have had to remove the door so we can all fit!). Therefore a renovation needs to be done so that I can walk or be wheeled in my chair straight into the shower. It will then be so much safer for me and my lovely carer's.
I love where I live and life would be so much better if I didn't continue to have seizures. I could try to learn basic things like use a spoon or fork properly or use a toilet. I have seizures every day which affects my daily life. I have a mental age of about 12 months and need help from my family and carers with all life skills. I am incontinent so I have to wear nappies. I have tumours on my kidneys, liver and heart. The tumours on my kidneys are now growing really fast so now I am now on a medication to try to slow them down. I started having seizures when I was 4 months old and have been on every medication there is to try to control them with no luck. Just recently my seizures have become more violent and intense.
The photos that have been posted are me having a great day and one of me when I was in the High Dependency Unit in hospital in March 2018. Before this admission I had 150 seizures in just one day. In the last 10 months I have ridden in an Ambulance 11 times, and been admitted to the hospital on all of these occasions! The last time I was admitted to hospital was only just this week. I had 130 seizures and also had 4 different types of seizures, with my family telling me that 1 type of seizure they had never seen me have before. I stayed for 2 nights before being discharged back to my host mum and dad. The clusters of seizures that I have been having are so hard to control. I have just been approved to use a new medication however, my neurologist spoke to my Mum and explained that while we have the approval it will end up costing $200 a day. I am on a Disability Support Pension so I can't afford it. However I have to try it as it is my last resort of anti seizure medication. I am now on medication that I was on when I was younger. I am currently on one medication that has been changing my behaviour, where I have become quite aggressive towards my carers, I don’t mean to do that though, its just a side effect of the medication.
Love Josh xxx
We don't like asking for help but with these two things we really don't have any choice. All we want for our big leaf flapping boy 'Boof' is for him to live out his life safely and with his seizures under control. His smiles, laughter and cuddles are the best things in the world. We would really appreciate your help.
Love Natalie, Bradley and Rebecca xxx