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Tuesday, 11 August 2020

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Seven-year-old boy with mystery illness has up to 100 seizures per day

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SEVEN-year-old Joey Jenkins has a life-limiting condition so rare that doctors have not yet managed to diagnose it. He has severe epilepsy, can’t walk, sit unaided or communicate verbally, and is fed via a tube into his stomach.

But he is a happy little boy who has started to babble and laughs often.

His dad Chris, 41, a senior manager at a drinks manufacturer, who shares custody of Joey with his ex-partner, sleeps by his side every night he is with him. If Joey has a seizure he needs to swipe him five times with a vagal nerve stimulator, which sends pulses of electrical energy to the brain. If this is ineffective, he has to administer a recovery drug, and then continue to monitor him closely for the rest of the night.

Joey’s seizures are becoming worse at night and this is when he is most at risk as his epileptic spasms need intervention immediately.

Chris and Joey

Chris is currently not eligible for help with care and says he is reaching the end of his tether. Charity Tree of Hope is helping Chris to raise funds to pay for a night-time carer for Joey so that Chris can get some sleep.

Chris said:

“I want to do the best for Joey and want him to have the best life possible, but it’s so difficult when I’m constantly exhausted. The priority at the moment is to raise funds for a carer but it’s hard to fundraise when I have no time! It’s been made extra difficult because of COVID-19 and Joey not being at school as he usually would be, of course.

“I am planning a sponsored Three Peaks Challenge with some of the members of a Lads and Dads support group I’m with at some point, but again, it’s very hard to find the time. Right now I just need help with caring – I don’t know how much longer I can cope.”

Gill Gibb, Tree of Hope CEO said:

“Chris is clearly in a very difficult position and we hope he can resolve it as quickly as possible.”

To donate to Joey’s fund, please click here.

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