Thomas will always be severely delayed in all areas of his development. However he is gaining weight steadily and now weighs almost 4 stone; this is a huge strain on mine and Jim’s backs when we are carrying him up and down the stairs on a daily basis. Bathing has also become more difficult, and as Thomas is much bigger and older, he needs at least one bath on a daily basis. Lifting a wet slippery 4 stone lad in and out of our family bath has already caused permanent damage to my back. This means we always need two people to lift him in and out of the bath. (A constant need for a carer to be on hand)    

Last year after much consideration and weighing up the pros and cons of moving Thomas from his secure bedroom next to ours we both felt that it was time that Thomas needed to be cared for on the ground floor level. Thomas was assessed by many professionals including a physiotherapist, occupational therapist, psychologist and paediatrician and they were all unanimous in their decision that Thomas needed safe space and bathing facilities on ground floor level and that we as his parents could not continue for much longer carrying him up and down the stairs.  After many meetings it was decided that he should be able to use his wheelchair between the downstairs rooms but also have a bedroom that was big enough to accommodate a high sided special needs bed and enough space where he can play safely, without being restrained in a chair. This room would be ‘Thomas proofed’ and would be completely designed around his complex needs. This room would also have access to an en-suite wet room which would have a full size changing bed and an electric bath which can be lifted up and down to enable us to bath him at waist level.

There is a £30,000 grant available for all disabled people who have their home adapted to keep them at home, but we have been told that the cost of the build and specialised equipment for Thomas will exceed £60,000. The bath alone is £7,500, and the build itself is estimated at approximately £45,000-£50,000 and we have to find the difference. Reluctantly we have conceded to ask for help. However Jim and I are very conscious that we are not a charity and any money raised would be helping our family alone. We would be grateful for any support you give us as we know Thomas’ life and ours could be greatly improved with this extra space in our home. £30,000 is such a lot of money, but I have started to contact local charities and businesses to boost the funds. We already have a trust account set up in Thomas’ name and any money raised will be deposited into the account, and can only be withdrawn with the signatures of several trustees.

We will never be a “normal family” but hope that the adaption’s to our home will enable us to continue to care for Tom at home in a safer environment. Tom needs to be at home with his parents and siblings but the older he gets this is becoming increasingly difficult without the space and equipment he needs.