Daily Mirror (Northern Ireland)
LITTLE CAOILTE CAN MOVE THANKS TO MIRACLE DRUG
3-year-old gets treatment boost
She was able to hold her head straight without any support RAB FITZSIMMONS BELFAST YESTERDAY
A LITTLE girl born with a severely limiting condition has moved by herself for the first time.
Caoilte Fitzsimmons, three, from North Belfast, was among three kids with Type 1 Spinal Muscular Atrophy who were put on drug Nusinersen.
The condition limits muscle movement and leaves sufferers in need of constant care.
Their families were left helpless previously when the drug was available in the US but not here.
An extended access programme was launched which had allowed one person in Northern Ireland to undergo the treatment.
But, in February the families received a shock call from then Health Minister Michelle O’neill to tell them that they would all be able to take part.
The three children who started the treatment two weeks ago were Caoilte, Mia Warren, six, and two-year-old Noah Collins all from Belfast.
Caoilte was the most adversely affected and just two weeks after starting treatment has now be able to hold her head up independently and move her arms and legs.
Before, she couldn’t move a muscle.
Dad Rab said: “Now she’s been moving her feet together, moving her toes.
“She was able to hold her head straight without any support for the first time.
“It’s been incredible to watch the changes in just two weeks.
“I’ve been getting teary-eyed watching her move in a way she’s never done before. She’s learned if we sit her up she can throw her head forward and she loves that, she keeps laughing – she knows that things are changing.”
“She had her second treatment on Tuesday and the progress so far has been great so we’re keeping our fingers crossed that things keep improving.
“Ideally I’d love her to be able to sit up and control herself on her own.
“It wouldn’t annoy me if she couldn’t walk, but getting up on her own and getting a bit of independence is what we would love to come out of this.”
Mia had more movement but mum Lisa said her daughter is “getting stronger”.
She told the Daily Mirror: “She got her second injection on Tuesday.
“She’s started moving the tops of her legs more, you can now see her shaking her legs and see them working.
“She wears a body brace, and she was never able to sit up without it.
“But a couple of days ago she sat for a minute on my knee with nobody holding her which was amazing.
“She was also able to turn her head more as well. She says to me, ‘I’m doing that myself’ and she knows she’s feeling stronger.
“We’ve noticed her facial expressions are also more pronounced. We’re really noticing that she’s a lot stronger and the impact has been so positive.”