Helping Harrison

Hello

We are the Williams family. We are a family of four who live on the northern end of the Gold Coast. I, Linda, have lived on the GC for over 30 years and my son Harrison was born here. We are trying to be an average family in what are not average times.

My husband Chris and I are parents to Grace 13yrs and Harrison aged 9yrs and we currently find ourselves hit hard by life in 3 areas at once. My son’s delay in getting an urgent respiratory machine, the NDIS recklessly slashing Harrison’s funding by 40% and also being thrown into the rental house.

Harrison unfortunately lives with a fatal condition called Duchenne Muscular Dystrophy. It is a muscle wasting condition slowly breaking down and stopping use of every muscle in his body i.e. legs, arms, torso, respiratory muscles, and the heart. Harrison is experiencing a noticeable decline in his respiratory muscles and sleep studies at the Queensland Children’s Hospital have classed him Category 1 to be set up with a respiratory machine since 21 February. Recent projections have projected funding will run out on 12 May 2022. The hospital need to test him for the right machine, the right airflow, and the right mask. He has been very unwell and spends most days in his bed without energy to get out of bed. He has not been well enough for school since November 2021.They cannot find him an urgent spot yet due to staffing shortfalls with the rise again of Covid cases. Once Harrison has the respiratory machine it should assist with his oxygen levels, and bounce back to the boy he was and be able to return to school and see his friends and zoom around the neighbourhood to see his friends.

Additionally, Harrison receives support from the NDIS and has been let down severely by them in his recent plan. The week before Christmas the NDIS sent Harrison a new funding plan that without explanation was slashed by over 40%. They cut funding to access his therapists, cut funding to disability support workers to support workers in our home, especially at this time when we need them the most and they even cut funding to incontinence products. We are still trying to fix this and funding is set to run out on 12 May 2022. The NDIS have not even contacted us yet to have a meeting. From our years of experience their processes we will never have a plan meeting with us and issue a new plan within the next few weeks. Ironically we have had to draw on the limited funding of this new underfunded plan to pay many, many hundreds of dollars for another round of reports from specialists at the NDIS’s request to fight this. Further reducing his access to the real support and therapy he needs.

At the same time help is cut to the point I, his mum, am caring for him predominantly on my own through the day to enable what funding we do have stretches as long as possible. I am not his mum but more his therapist and nurse. His dad is working extra-long hours so he can earn time off to help at home. We are caring for a 9-year-old like someone cares for a baby with his personal care. His bed is also his change table. We are holding him upright in his bed to dress him or he easily tips on his side as he has lost strength in his torso and very little strength in his arms. He must be positioned to leaned forward and for me to take his weight on my chest and simultaneously tuck his sling down his back so I can attach his hoist and use it to lift him out of the wheelchair and into his bed. It isn’t safe. He can no longer lay on his side independently and needs a pillow along his spine to support him on his side. Harrison is predominantly reliant on other people and for everyday care and that is hard as it is.

 

Now we also find ourselves in the rental crisis. Our landlord has decided to sell. Rentals have skyrocketed due to the massive increase of people moving here from interstate recently and also the victims of recent flooding events needing a home.

 

We can’t cope with a major rent increase and that is what we face. I can’t work more as I am currently doing as I am tied up with various appointments for my son and caring for him at home. I already gave up a part-time office job as my son’s condition progressed. before and we will again. I don’t know what more I can do. We’re already washing Harrison down in bed because we can’t get his wheelchair into the bathroom where we live now. Buyers will be walking through while Harrison is sitting sick in bed hospital bed with his wheelchair, hoist, and other disability equipment around him and through the house.

 

My real dream would be to have enough of a deposit to buy our own home and be able to modify for Harrison to drive his wheelchair in the front door and any room of the house, to have a bathroom he can get into and have two dogs and a cat for company. For him to have security for the rest of his life.

 

My real dream is to find a home for us to live in for the rest of Harrison’s life. A fully wheelchair accessible miracle home in the area where we live and the extra special wish of my kids in having two dogs and a cat. To remain near his friends. Harrison is looking forward to going back to his school once he gets his respiratory machine. He’d like to keep working with the same disability support workers who come into our home and provide much needed help, keep the same therapists that have seen us through some big challenges including Harrison losing his ability to walk and now losing function in his arms and respiratory system and for us to keep some working with people that know what we’re going through. We have no chance of saving for a deposit while caring for our son.

 

It is hard for us to put our hands up for help but to have all these big issues happen at once is hard to process. We don’t know what we can do to go forward. If you can help in any way, we are sincerely grateful. We have set this GoFundMe up to ask to help fund his therapy appointments, disability support workers, incontinence products and various other areas such as the cost of fuel to travel to Brisbane to the Queensland Children’s Hospital, parking etc.

 

We never expected to have to do this and would honestly love nothing more to then simply enjoy the time together as a family that we have.

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