A mother has spoken of her agony when she found out her son had been diagnosed with a rare, terminal brain disease after suffering a dozen seizures a day.
Victoria Smith's one-year-old son Kian has Lissencephaly, a rare condition that causes a child’s brain not to fold properly and remains smooth, the Stoke Sentinel reports.
The condition ultimately affects Kian's neural functions; he is unable to walk or talk and can suffer multiple seizures.
Kian's family, including father Chris Smith and three other children, was devastated after receiving the phone call of the terminal diagnosis in March - just as they went into lockdown.
The family has set-up a fundraising page for Kian, who turns two next month, with the goal to make him as comfortable as possible.
Mum Victoria Smith, 32, said receiving the MRI results at the beginning of lockdown made coming to terms with the diagnosis even harder.
The family all live together in Telford, north west of Birmingham.
“I fell to the floor because it was not what I expected. I was expecting them to say he will never talk or be able to walk but I didn't expect them to say he is terminally ill and for us to enjoy the time we have, it was horrendous,” she said.
“I have to get him up at 7am in the morning to wash and dress him, I brush his teeth for him because he can't do anything himself. I have to set up the feeding tube which takes us 40 minutes... It’s hard work, stressful and tiring but it is my goal to do that.
“The doctor said it will be a miracle if we get him to two. She said to enjoy the time we have."
The page has so far raised more than £1000.
Mrs Smith told the Stoke Sentinel she hoped to buy Kian an epilepsy alarm that she says costs £500.
"There is also a special chair that he will be able to sit in which is around £389," she added.
“I have got three other children and it has affected the family. Every time I take him into the hospital his siblings ask ‘is he going to die?
"The children are always asking questions so I am trying to reassure them and look after Kian at the same time."
