My name is Erika and I am a single mum of two teenage boys; Adam 17 and Oliver 14. Sullivan’s Heroes are helping us to raise money for Oliver.
In 2019 we were given the devastating news that Oli, then aged 10, had Friedreich’s Ataxia; this is a very debilitating neurodegenerative condition with progressive life limitations for which, as yet, there is no cure.
My loving, kind and happy child faces huge daily challenges. The condition affects muscles throughout his body. Oli’s mobility is now severely impaired: to such an extent that he is mostly restricted to his bedroom and wheelchair bound. 5 years ago he was BMX racing and playing football. 😞
To keep Oli safe and provide him with aids to give him some independence and dignity we desperately need to make major adaptations to our home. Plans have been approved in principle by Surrey County Council. The cost is estimated to be in excess of £100k. To date we have been granted £30k from the Disabled Facilities Grant.I am working with SCC to get the majority of funding but there are additional needs that won’t be covered hence why I am trying to raise money..
Oli’s condition affects his muscles and a bath helps him to relax so are hoping a bathroom will house a wet room purely for his sole use. This will hopefully give him the feeling he is independent and has his own space. We are therefore hoping to raise funds for a bathroom for my other son and myself to use in the loft conversion.
Oli loves nature so ramps suitable for his wheelchair will give him access to go outside and into the garden, this is another project we are trying to raise funds for.
Adaptations are also required to the kitchen to enable Oli to prepare simple meals, more important as he gets older.All this will give Oliver the dignity and independence he so deserves. This is a cruel disease but making our home more accessible for Oliver to have a much better quality of life and independence is our mission.
Thank you for taking time to read about Oli.
In 2019 we were given the devastating news that Oli has a progressive life limiting neurological condition – Friedreich’s Ataxia. He is 14 years old.
Sadly Oli’s condition has progressed to the point where we now need major adaptations to our home. The cost of this is in excess of £100k. The Disabled Facilities Grant is currently only for £30k maximum which has been granted to us however this only covers a very small amount of the work needed.
We need a through floor lift, a loft conversion, wet room as well as a bathroom and bath, one that can be raised and lowered to help with Oliver’s muscles and can give him a place to relax.
We also need adaptations made to the kitchen to add areas where Oli can have somewhere to make meals in the future to give him more independent living. We also need a ramp built so he can get his wheel chair into the garden.