A room of Kit's own

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For the first 18 months of his life our son, Kit, was a happy, kind and helpful boy. He was reaching all the milestones and his latest phrase was 'there you go' for everything he got out of the dishwasher! 

He began to have seizures linked to common illnesses such as tonsillitis, when out of the blue he had a devastating 2-hour seizure in 2021 (with no known cause). This caused global encephalitis (swelling of the brain), and he was placed in a coma for 3 weeks to protect his brain. While he was in PICU at King's College hospital we were told he would not survive, and to ring our family. After the most painful phone calls a parent can have, we prepared ourselves to say goodbye to Kit and began the process of organ donation. 

But our brave boy wasn't going to give up so easily, he came off the ventilator and could breathe on his own! We were told he would be in a vegetative state, but after we moved to HDU and then to the ward we started to notice small improvements. We were in hospital for 3 months before we began our new life at home. We had only bought our new house 6 weeks before the seizure, and it was a doer-upper to say the least!

We are incredibly grateful that Kit is alive and enjoying his life, however he has been left with epilepsy, motor-dysfunction, partial blindness and with life-changing brain damage. He can no longer talk, walk, grab things; none of the things he was able to do before the seizure (except smile!)

We are fundraising to build an extension for him to have a room of his own downstairs with wheelchair access, wet room bathroom, and access to the house so he can be with us. We may qualify for some government funding, £30,000-£60,000, but this will not cover the single-storey extension needed to future proof his room which has been quoted to be £135,000. We are currently awaiting a stair-climber and hoists to be fitted as an interim measure as he is too heavy to be carried upstairs safely and therapists will no longer lift him. On top of this his specialist bath alone is £16,000.
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I am a primary school teacher, working part-time to care for our children, and my husband Nick is a nurse at Demelza (a children's hospice and respite care). As we both have careers, and a mortgage, we qualify for almost no support despite the huge costs involved in giving him a 'normal' happy life, particularly therapies, vehicles and neurological support only offered privately. We also don't qualify as carers, as we earn 'too much' and therefore receive no carers allowance. Kit has huge potential to improve, we've seen him progress in strength and flexibility, vocalisations and eyesight improvements and it's only been 2 years since the traumatic incident. He has defied everything the doctors said, but in order to continue to improve he needs the space within our family home.   

We know that this is the worst possible time to be asking anyone to help us financially, however we are desperate, we know it is a significant goal to reach the target and to begin the building works.

Thank you for taking the time to read this,

Kaz, Nick, Kit, Orry and Ellie (Kit's cousin who also lives with us).

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