Over the last 17 months, we have been fundraising to try and meet the costs of raising a child with Mitochondrial Disease. We want all our supporters to know what we’ve raised and where the funds have and are being spent. To date we have raised a massive £38,000 with the help of Little Maxwell’s supporters.
What we’ve spent so far
Present expenditure includes:
£18,000 on Maxwell’s specially adapted car (Maxwell doesn’t qualify for Vehicle Motability until he reaches the age of 3. Even when he qualifies for Motability (which is in the region of £200 per month) this will not enable us to purchase a wheelchair-accessible car.
£6,240 for Maxwell’s much needed private physio per year (two sessions per week).
£7,000 for Maxwell’s specialist bath (which has not been purchased yet and may involve more expense in purchasing fittings).
We still need to raise at least £61,000
The remainder of the money is in Maxwell’s Trust Fund and is going to be spent on Maxwell’s build, a project to convert his Granny’s garage into a purpose-built safe environment adapted to his needs. The development of the garage is going to cost in the region of £110,000. Peter and I are using all of our life savings but we still have a shortfall of £61,000 to complete the build. We will be continuing our fundraising to give Maxwell the fully adapted home which will meet all of his specialist needs, giving him as normal a life as possible.
Unfortunately the NHS is unable to cover many of the specialist equipment that Maxwell needs (specialist bath, nebuliser, physio, specialist play seating, specialist wheelchair) and they cannot controbute to any of the build costs. Normally when you have a disabled child you are entitled to a £30,000 Disability Living Adaptation’s Grant, but because we are converting a garage we are not entitled to this.
We need and value your continued support
Emma has had to give up her full time job to be Maxwell’s full time carer and Pete works as often as he can, but more often than not he’s required at home to help with Maxwell’s care. Pete and I have devoted all of our time to Maxwell since the moment he was born. When Maxwell was taken into hospital we spent 9 months with him living in the Paediatric Intensive Care Unit of St Georges Hospital in London and the Royal Alex in Brighton. We don’t know how much time we have with him and live with knowing his condition can change within seconds. We are committed to giving him a special day every day and try to give him as normal a life as possible.
Maxwell will be 3 years old on the 14th January and has already gone through so much but still continues to fight. All we want to do is provide Maxwell with the best life possible and make memories as a family and give him all the love we can for as long as we can.
We would like to say thank you to everyone for your continued support.