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Max’s condition will have a lifelong impact on him. With nothing known about his condition, the long- term prognosis is uncertain, but we have been told to expect him to be wheelchair-bound and requiring an unknown amount of care. To address his needs in the immediate future, we are adapting our house to accommodate a new bedroom and bathroom to fully meet his requirements. The layout and structure of our house will have to be adapted to accommodate a through floor lift to his new bedroom and bathroom upstairs. Therefore, the adaptation plans involve turning our existing kitchen and bathroom into a lift shaft and landing for the through floor lift. We therefore have to re-allocate our kitchen and family bathroom and build an extra bedroom for our four year old daughter who will lose her room in the process.

This adaptation and extension project is costing in excess of £130,000 and will provide much needed double level access, living, sleeping and washing facilities for Max. The alterations have to cater for numerous considerations including: wheelchair access and door widening throughout the ground and first floors; ramped wheelchair access to front and rear of house; ceiling tracking and hoisting facility between bedroom and bathroom; wheelchair accessible bathroom and equipment; wheelchair accessible bedroom; wheelchair accessible living space; adequate turning circle space throughout the ground floor for a wheelchair.

We will hopefully be awarded a Disabled Facilities Grant towards these adaptations, which will cover a maximum of £30,000 towards the total estimated cost of over £130,000. We will need to move out of our house into rented property while the work is being carried out, as it is not practical for Max to stay in the dusty environment with his respiratory weakness. We only purchased this house in the year before Max’s birth and spent our funds on renovation cost, which used up all our available funds. Due to Max’s unknown condition there are no specific charities related to his condition and no specific areas for provision of funding and equipment to aid him. Therefore we need help in meeting the remaining over £100,000 required for the adaptations and to create a home for Max. Any contribution towards these costs would be greatly appreciated.

We are in the process of having plans drawn and will then be able to supply a full cost plan. Currently these cost are a gross estimate.

Moving forward

The adaptation of the house to provide the space and equipment specific to Max’s needs, will benefit him greatly as it will provide a safe and comfortable environment to meet his requirements as he grows, and give him the opportunity to gain as much independence as his condition allows. His medical requirements and susceptibility to infections dictate that much of Max’s day is spent at home having therapy and meeting his complex needs, rather than attending classes, groups and outings as with other children of his age, therefore a home environment which will maximise his quality of life will be of huge benefit to him.

Although Max remains fragile and highly susceptible to picking up respiratory infections, he amazes everyone with his courage throughout everything. He is a very happy, inquisitive and sociable little boy, with a sense of humour and great strength of character. Even at his young age, he inspires all who come into contact with him.

So if you can run, jump, sing or do anything else to help us raise the money required, we would be most appreciated!

Let’s give Max a home with a future!