Harry is my 7 year old little boy, brother to Joshua who is 10.
Harry was born in 2009 a healthy bouncy baby and went on to meet all milestones, when Harry reached three years and started nursery we noticed he was clumsy and forgetful around his peers.
Over time he would trip lots, forget the skills that he had learnt and carried out daily, and started losing his eye sight.
We had lots of tests which never returned an answer as to why Harry was facing these challenges and for each test that got completed we hoped that we would get a result that would mean Harry could be given some medication and we would go back to having our mischievous little boy that likes to keep us on our toes.
On 30th July 2014 we got asked by GOSH to go to an urgent appointment on the 31st July and were told that we were not to take the children with us.
We entered the room with pounding hearts knowing that they had found something and that day we came out of that hospital and life as we knew it changed forever.
We were told that one of our most precious gifts, our son, had a neuro degenerative condition called batten disease. Over time Harry would no longer be able to walk, talk, lose his sight, require feeding through a tube and become bed ridden. There is no treatment and there is no cure. Harry has a late infantile variant of the disease and children usually lose their life to this before the age of twelve.
Harry is now immobile and unable to support himself, he can no longer talk And has recently had his feeding tube fitted.
We have had our house adapted so Harry has a downstairs bedroom and bathroom which is amazing and helps us to keep him as comfortable as possible. In this room we were fitted with a ceiling track hoist between bed and bath which makes a big difference with transferring Harry. We have encountered a problem though that is having a major impact on Harrys day to day life and that is why I have contacted 52 lives.
As we have a ceiling track hoist we are not eligible to be given a portable hoist. Harry is now missing out on being able to lay on the floor or settee and be transferred to different pieces of equipment anywhere else other then on his bedroom. Harry used to spend lots of time on the floor playing games with Joshua and they have a very close relationship. We have been given a quotation for quite a specific hoist that the occupational therapist has recommended due the limited space in our home. We feel like we are stuck between the devil and the deep blue sea at the moment as we are trying to give Harry and Joshua some special times to make precious memories before Harry is to poorly to do anything, yet we also need to fund vital equipment that gives Harry the best possible quality of life. The hoist would also benefit Harry when visiting family members homes and be useful in the garden and also on any trips that we go on. Not only would Harry find this amazing having the freedom of being able to access different spaces it would also help with our back issues lifting him when out and about which takes it toll and we don't like to think of the consequences if one of us got seriously hurt. Harry is also becoming more fragile over time and can experience pain when being lifted of not in the correct position.
We just want to be able to keep Harry happy for as long as possible