Article in The Scottish Sun
Stricken Anya Behl, from Edinburgh, suffers from Alternating Hemiplegia of Childhood – and was once left paralysed down her right side for two weeks
By Paul Rodger
28 Feb 2019, 20:54
A BABY girl has been compared to a ‘human timebomb’ after being diagnosed with a condition which causes stroke-like paralysis
Stricken Anya Behl suffers from Alternating Hemiplegia of Childhood – leaving her with temporary loss of movement on one or both sides of the body.
In one fierce episode, the 18-month-old tot was left paralysed down her right side for two weeks.
Parents Abhishek and Katherine, from Edinburgh, said their world was turned upside down when she was diagnosed at just 10 weeks old.
Tiny Anya let out a “terrible scream” as her eyes started to flicker – before being rushed to the capital’s Royal Hospital for Sick Children.
Mum Katherine, a hospital doctor, feared her daughter “was going to die” after the first of many AHC episodes.
She added: “It is heartbreaking to see her when she can’t move or support herself.
“We are just grateful for moments she is well and try not to focus on it.”
Baby Anya is one of just two kids in Scotland and 500 worldwide with the ‘one-in-a-million’ condition.
Dad Abhishek revealed the family try to lead a normal life but have to watch the tot “like a hawk” every day.
He said: “On average she will have an episode two to three times a week, which can last between 45 minutes and an hour.
“During the episode, she has seizure-like symptoms and can become paralysed on one side of her body.
“The longest she has been paralysed for was two weeks on her right side.
“For the first year, we didn’t even leave Edinburgh because we couldn’t travel with her in case she had an episode.”
Her family have now launched the ‘Anya is One in a Million’ campaign to try and raise £25,000 to help researchers in the US find a cure.
The money will go towards a pre-clinical, non-human trial to be conducted with the support of several AHC foundations in the US.
The trial is essential before ethical approval can be sought with a view to testing the gene therapy in humans.
To donate to Anya’s JustGiving campaign, click here.
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