Our 'little warrior' — Funds to be raised for Newark baby with rare epilepsy
A young mum is keeping a near-constant vigil by the hospital cot of her baby son who can have up to 150 epileptic seizures a day.
Kane Tinegate, who was born in May, suffers from a form of epilepsy called Migrating Partial Seizures of Infancy and has yet to leave hospital.
His family say only 100 children worldwide have the rare condition.
Mum Shannon, 25, from Newark, said that despite Kane’s tender age, he was a little warrior.
“I am his mum and I know what hurts him,” Shannon said.
“He definitely loves cuddles, because if he hears you, he wants you straight away.
“He has started to smile and is better now at looking and focussing, like he is looking at you and taking it all in.
“He is very alert which is a shame in some ways because when he is having a seizure, he knows what is going on.
“This is Kane and this is who he is, he is a little warrior.”
Shannon, who has an older son Cole, 17 months, with husband Craig said sometimes there were tough choices to make because money was tight.
“When we have the weeks where there is not enough money, it is either picking a food shop or coming to see my baby at the hospital,” she said.
Kane is likely to be in hospital for some time and is regularly taken into intensive care.
Shannon said: “It helps that I am at the hospital with Kane a lot because I want him to hear my voice and know I am his mum, just as much as I am Cole’s.
“I try and be there as much as I can for both of my children.”
Shannon had a normal pregnancy and a water birth, but when she was having skin-to-skin with Kane, she realised something was wrong.
He had three apnoeas — a temporary stoppage of breathing — and medics realised he was having seizures.
“When I saw him for the first time properly, he had wires over him and across his face with machines bleeping,” Shannon said.
“He will have developmental delays but not all children with epilepsy are the same. We will have to see what Kane is capable of when the time comes.
“I think some days he will have a good quality of life, but others I think he will not because of the variation of seizures that he has.”
Shannon said she wouldn’t be able to get by without her family.
“They help with money so I can travel to the hospital as I do not drive,” she said.
“My husband Craig comes to see Kane whenever he can, but with him working all the time and feeling like he has to.
“I don’t think he gives himself a break.
“This is not something people should have to deal with, you expect to come home after the birth, have family days out and baby brother bonding — but it is not like that.”
Charity fundraiser Matthew Ash has taken on the family’s cause and organised an indoor car boot-style sale on October 27, from 9am, at the Magnus Church of England Academy, Newark.
It is £10 per stall with free entry for buyers.
“I personally think that in this troublesome time, we all have to be there for each other, whether through moral or financial support, Matthew said.
“The family have gone through a lot and anything that we can do as a community should simply be sorted.
“I will organise a drop-off point for nappies, size 3/4, and baby wipes. There will also be a raffle.
“Hopefully not only will this give the family a brief financial respite, but will also show them that they are not alone, the whole community are there to support and help them.”
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