Weʼre raising £5,000 to Support Henry and Freddie Spink who are both severely disabled.
- Helston, UK
- 17 days to go
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By Henrietta Spink
We have two beautiful boys, Henry aged 27 and Freddie aged 23. Henry is to this date a medical mystery. He does not function at all and remains in a semi sleep state. He cannot do anything for himself and is at the level of a three month old child. He has 20 to 30 epileptic fits a day, is incontinent and cannot speak, stand or sit unaided or walk. Yet no damage to his brain whatsoever has been found despite the most detailed testing. Henry weighs 11 stone (155 lbs/70 Kg) and is nearly 6ft (1.80m) tall. Henry’s fits have recently escalated to sometimes 50 in one night. He has been prescribed emergency medication recently for the first time and has had an emergency MRI to determine whether he has a possible benign brain tumour indicative of the type of fit he is having. We are still waiting for results.
Freddie was born with a diaphragmatic hernia [all his guts in his chest] which was missed despite having had 20 scans. Freddie spent the first 6 weeks of life on life support and during this time suffered a major stroke that was also missed. Freddie is semi mobile, autistic, has slurred speech, severe learning difficulties and a restricted oesophagus. Because of this restriction, his throat can block at any moment with any mouthful of food, which needs surgical intervention. He is at the mental level of a 3 year old, is 5ft 9’’ (1.75m) tall and weighs 17 stone (240lbs/110Kg). This weight is due to a side effect of his medication.
Neither boy has had a diagnosis despite extensive tests. Both require significant full time support: Henry is assessed by the local authority and the NHS as needing two carers with him at all times, and Freddie as needing one carer at all times, and two when he is out of the house.
When the boys were at the age of 14 and 17, an American scientist became interested in their case and recommended we have MRI/DTI scans. We could not get them done in the UK so were sponsored to have them done at Boston Massachusetts General Hospital. The scientists were convinced Henry had either missing, blocked or damaged neural pathways. Henry’s scan revealed that even the neural pathways were all intact and normal. However, the scans revealed Freddie’s stroke and strokes are like the rings on a tree – you can date them. His was dated to just after birth. As a result of it being missed he had no treatment or therapy.
I never gave up looking.
For 12 years we funded our own care for the boys. I was always the second carer with rarely a day off. By the time the boys became teenagers we could no longer find nannies who wanted this kind of work. We needed professional carers but our local authority refused to support the boys beyond the bare minimum, saying that “we have no legal or moral duty to support you, when you are on benefits we’ll help you”. Slowly, slowly we were ground down. By the time Henry was 17 and Freddie 13 we had lost our house in London. Michael had been forced out of work. We had lost our house, careers and well-being but at no time did we consider abandoning our sons.
We had no idea what to do or where to go. We felt no local authority would support us and could see no future remaining in the UK. We bought a boat with the last money from our house, and set sail.
After 6 months at sea we became involved in a USA medical trial at the University of California. We decided we wanted to continue the treatment and therefore returned to the UK. We retreated to our small cottage in Cornwall. This was a God-given haven: many years earlier I had won just enough money with a Pools win to buy the cottage, our refuge through all the horrendous battles we’d had with our local authority, without which we would not have survived. The cottage was never meant to be lived in full time but now we found ourselves living there full time. The boys didn’t even attend school. We were submerged in the darkest fog I’d ever experienced.
Slowly we came out of that fog – I’m not really sure how but somehow we did. Our wonderful friends started the Spink raffle and out of that money we rented a small two bedroom flat in London, into which we fitted the four of us, plus carers, which was often a tight squeeze. This meant the boys could come to London every two weeks for medical treatments at Queen Square Neurological Hospital and Michael could begin to work where ever possible. I wanted to campaign to improve disability legislation and we successfully fought to get portability of care packages into the new Care Act. Up until now disabled and their carers could not move to another local authority without losing their entire care package.
After two years there wasn’t enough money to continue renting the flat so we brought our boat to London and started using that as our London accommodation – it was by far the cheapest way to stay in London. We started coming to London every other week to work, which was essential for us to makes ends meet and survive. The 600 mile round trip is very tough and both boys can be up for much of the night.
Henry and Freddie are about to finish college this July, which is another massive milestone for us. During term time, they have been at college from 8am to 4:30pm Monday-Friday. Now they will no longer be out of the house during term time, which means that they and their carers will be in the house during the day. There will then be up to eight adults in the cottage. The house is small, without any separate area for the boys, and this will mean that the noise level will rise sharply. We have almost no privacy, as the carers are with us from 7am to 8:30pm every day. It is impossible for Michael and I to look after the boys without this level of support. Michael tries to work from home, but it will now become very difficult. Henry has to be wheeled around the house in a wheelchair all the time, and Freddie is autistic, making a lot of noise and demanding attention from everyone. The boys require specialist food preparation, particularly for Freddie as a result of his diaphragmatic hernia which has caused his throat to narrow.
We are still searching for a medical answer: the boys are on 3 genome programs to try and diagnose them. I have no doubt that we will find the answer.
For a documentary on the family shown on UK television, see: http://www.youtube.com/watch?v=Ci0W0Ix8pVc&feature=youtu.be
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THE SPINK FAMILY started crowdfunding