PARENTS who were told to take their daughter home “but not get too attached” are desperate for a lifesaving drug to be approved on the NHS.

Little Sophia Hart, of Sedley Rise, Loughton, was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) just before her first birthday and her prognosis was bleak.

In February, her parents, Victoria Hart and Gennadiy Ilyashenko, took her to Paris for the first course of a series of injections and the two-year-old began showing “magnificent” progress.

The treatment is funded by private Polish companies and was opened up to children from other European countries when it was approved for use in Poland earlier this year.

But the drug is due to be cleared by the French authorities imminently, meaning Sophia will no longer be entitled to treatment in Paris – so her only hope is for the NHS to approve it.

Sophia had to travel to Paris for lifesaving treatment - but may not be able to go back if it is approved in France

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Dad, Gennadiy, 37, said: “Sophia’s next dose is due in August but there’s a chance she won’t be able to have it.

“If she even misses a single dose, she’ll degrade pretty rapidly and the outcome doesn’t bear thinking about.

“She’ll die, and it will happen quickly and traumatically. Before the treatment she was going downhill very quickly.

“For Sophia, it’s not just been a life changing drug, but a lifesaving drug.

“She was lucky enough to get onto the treatment programme when she was older than most kids are when they started the clinical trials. It’s important she stays on this treatment.”

The drug, Nusinersen, has already been approved for European use but once it is approved in France, the toddler’s life will hang in the balance.

Although the treatment in Paris is free, the couple have had to pay for the hospital stay and transport costs out of their own pocket.

Sophia is one of 150 children in the United Kingdom who could benefit from the lifesaving drug and her parents have banded together with others to form a support network.

Mr Ilyashenko added: "We've had no support from the NHS and feel like we're in limbo until it's approved - we fear they think it's cheaper to bury them than it is to sustain them."

The condition causes muscle weakness, a weak cry, difficulty in breathing, swallowing and sucking.

Mr Ilyashenko added: “There’s no way to describe what it’s like seeing your child locked up in her own body and not being able to do anything about it.

“It is watching your child’s marvellous brain become trapped in their useless body.

“Without us, she’s very helpless. She can’t pick up a book and flick the pages, or play with her toys.

“Before the trial, she’d lost movements in her legs and couldn’t sit up without any support. She was losing head control.

“But since this treatment, she’s learning to roll again and her head control is back to normal.”

Sophia is learning to roll again and her head control is back to normal, but stopping the treatment could cost her her life

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There is not a single Type 1 survivor and although children usually die before they reach the age of two, some can live up until their 10th birthday.

Sophia started showing symptoms of the disease before she turned one, but many people put it down to her being a “lazy” baby.

When they sought a private consultation at Great Ormond Street, they were horrified to be told she would likely need to be fed through a tube and require oxygen before she turned two.

Mr Ilyashenko added: “It was like hell. What do you do? It made us feel devastated. We prayed the doctor was talking rubbish but the genetic results came back and confirmed it.

“She said there was nothing we could do. She told us to take her home and love her, but not to get too attached. It was heart-breaking. We were devastated. Horrible isn’t even the right word.

“We went from a happy family, where everything was fine, to this. But today, she’s so clever.

“She’s exceptionally smart. She can count to ten in Russian and English, has a 500 word vocab and knows all of the colours as well as the alphabet.”

Sophia appeared normal when she was born but was soon diagnosed with Type 1 SMA

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The couple, who have been married for 13 years, have been overwhelmed with donations to help pay for Sophia’s care – but say this “isn’t about the money”. So far, they have raised over £19k.

An NHS England spokesperson said: “The National Institute for Health and Clinical Excellence (NICE) is carefully considering nusinersen (Spinraza), and the drug company involved has been asked to share results on how well its product works as soon as possible."