Amazing moment three-year-old girl with severely life-limiting condition moves by herself for the first time

A three-year-old girl born with a severely life-limiting condition has moved independently for the first time, just two weeks after she started taking a miracle drug.

Caoilte Fitzsimmons, who has Type 1 Spinal Muscular Atrophy (SMA), was previously unable to take Nusinersen as it was unavailable in Northern Ireland.

An extended access program was launched allowing one lucky child in Belfast to undergo the treatment and this was later extended to help two other children, including Caoilte.

SMA limits muscle movement and sufferers need constant care around the clock. But just a fortnight into the treatment, Caoilte is now able to hold her head up independently and move her feet, toes, arms and legs when before she couldnt move a muscle.

Her dad, Rab, admitted that the significant changes in such a short period of time have made him feel emotional.

Its been incredible to watch the changes in just two weeks, he said. Ive been getting teary-eyed watching her move in a way shes never done before.

Shes learned that 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 were keeping our fingers crossed that things keep improving.

Rab hopes the treatment will give Caoilte some independence.

Ideally Id love her to be able to sit up and control herself on her own, he explained. It wouldnt annoy me if she couldnt walk, but getting up on her own and getting a bit of independence is what we would love to come out of this.

Mia Warren, six, and Noah Collins, two, are also receiving the miracle treatment, which was previously only available in the United States.

Mia was already able to move before starting the treatment but her mum, Lisa, has noticed that she is getting stronger.

Shes started moving the tops of her legs more, you can now see her shaking her legs and see them working, she said.

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: Im doing that myself and she knows shes feeling stronger.

Weve noticed her facial expressions are also more pronounced. Were really noticing that shes a lot stronger and the impact has been so positive.

Read more at: ervse.com

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