'Our baby boy had 300 seizures a day and was given just weeks to live - just like Coronation Street's Oliver'
, thought to affect more than 15,000 families across the UK, has no cure – so a diagnosis is a devastating one.Credit: Katie BrewerKatie, 33, said: “When Toby was born, he was absolutely perfect.“Even though he was a tiny little dot at 6lbs 3oz, he was perfectly formed. We couldn’t wait to get him home.”
By luck the consultant at Tameside Hospital was an epilepsy specialist, and advised them to get straight back in the car and go Manchester Children’s Hospital. The couple were left in the dark as they sat at their son's bedside while medics busied around them carrying out tests.“We didn’t even know what they were looking for,” Katie says."Then at some point when he was still on the ventilator, we were taken in by the consultants to find out what was going on.
Toby was taken off the ventilator after two weeks, and by the end of October his parents agreed with medics that with strong support from community nurses, it would be the kindest thing to take him home.“He could have stayed in hospital or gone to a hospice, but we’d bought this house to be our home,” says Katie.By then Toby’s parents knew his ill health could be down to Mitochondrial Disease, which can affect any organ in any person at any age.
“I did it in three hours because I didn’t want to be gone for long. I got it in BHS and I remember paying 10p for the bag to take it home."I had his feeding backpack on over my wedding dress and two of the nurses from the hospital were there to help. They couldn’t have done more and we loved the day.
“The results showed the precise combination he had was incredibly rare, and they told us there was a one-in-four chance of a child of ours having it, a two-in-four chance of being a carrier but not being affected, and a one-in-four chance of not having it at all.
“We’re so lucky to have Toby,” she says. “But the reality is there’s no cure for this condition, and we cannot bury two kids.“I remember walking through Tesco’s just after we’d had his official diagnosis and a lady asked if Toby had cancer.
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