The family of 17-month-old Annabelle, who last Christmas was diagnosed with a severe degenerative spinal condition, are fundraising for a hydropool as she makes a “miracle” recovery.
On December 23 Barkingside couple Michelle and Chris Thomas received the heartbreaking news that no parent wants to hear.
At Whipps Cross Hospital they were told that their daughter Annabelle had been diagnosed with spinal muscular atrophy 1 (SMA1), and that she had less than a year to live.
“All I kept thinking was why me? I have just got a beautiful girl and now someone is going to take her away from me,” mum Michelle told the Recorder.
Annabelle was transferred to Great Ormond Street Hospital, and there doctors explained she had no muscle strength in her spine – Michelle described her as “floppy”.
She wouldn’t be able to walk, talk, eat and eventually live.
Michelle, 37, said she couldn’t stop crying: “How am I going to watch her die?”
However on Christmas Eve Great Ormond Street Hospital gave Chris and Michelle a “glimmer of light in all of darkness”.
A new drug nusinersen was finishing clinical trials in the US, and it may be able to help.
In December it was licensed for the UK – the first drug in the world to treat SMA1, and in February Annabelle was selected as the first British child to be given it.
She’s had five injections now, and will be given one every four months for the rest of her life.
And since then Annabelle has made “miracle progress” according to her mum.
“Just the other day she held her head up for 15 minutes, which doesn’t sound like much but meant the world to me,” Michelle explained.
“She’s started making noises and she is able to kick in water, which is why the hydropool is so important.”
After Annabelle started the injections doctors changed her life expectancy to between three and four years, and now they have taken a time scale off it.
Michelle does physio with Annabelle every day, but to use a hydropool, which is so important to Annabelle’s development, they have to go to Enfield as there isn’t one in Redbridge.
Michelle has to take three important and heavy bits of kit with her on the long trip, and is also worried about Annabelle getting ill, which she is very vulnerable to.
“I’ve become quite reclusive,” Michelle said.
“I’ve stopped going out with her, going to baby groups, as if she picks up a disease it could literally kill her.”
This is why the family have started crowdfunding for a hydropool, so Annabelle can get the physio treatment she needs safely in her own home.
They are hoping to raise £40,000, which will create Annabelle’s garden in a special outhouse out the back.
It will have a hydropool, a wet room for Annabelle to wash and an area for her to get changed.
Michelle said: “We’re going to grow roses, as Rose is Annabelle’s middle name, and install lots of mirrors as she gets really excited when she sees herself in the mirror.
“They show her what progress she is making, which she really likes.”
And Michelle said the reaction has been amazing.
“We have raised almost £8,000, including a £5,000 anonymous donation.”
Michelle explained the last nine months have been tough, but things are finally starting to look up and Annabelle’s positivity has helped get her through it.
“She’s always smiling, she just so positive and happy I couldn’t have done it without her.
“She’s had to have so many blood tests and she hasn’t cried once.”
Michelle said Annabelle absolutely adores music, and loved watching Glastonbury with her dad Chris.
“She has this little wooden xylophone which she loves playing.”
The family still need more than £30,000 to build Annabelle’s garden, and if you are able to donate visit her Just Giving page by clicking here.
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