Family raising £10000 to help extend baby Ella’s life

THE family of a “beautiful and happy” Loughborough baby, battling a rare neuromuscular disorder, are trying to raise £10,000 for treatment that could extend her life.

Seven-month-old Ella-Rose Long has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 which causes severe muscle weakness and a life expectancy of less than 18 months.

Her parents, 23-year-old Leah White and 25-year-old Matt Long of Holland Close, are now trying to raise enough money to travel to Paris so that Ella-Rose can undergo a new treatment that has the possibility of extending her life.

Leah and Matt have also enlisted the help of Loughborough MP Nicky Morgan to try and get the treatment available in the UK, as it is currently only open to those in the USA and France.

Leah told the Echo: “When she was around five months I noticed she just wasn’t doing what she should be at that age.

“She had blood tests and urine tests and they discovered she had SMA.

“There are four types of SMA and Type 1 is the most severe; they told us babies with Type 1 don’t really live past 18 months.

“It didn’t feel real. We just both cried and cried.”

Seven-month-old Ella-Rose Long with her parents, 23-year-old Leah White and 25-year-old Matt Long, of Holland Close, Loughborough. (Photo: UGC TMM)

After the diagnosis, Leah and Matt found out about a new drug called Spinraza which has recently been given approval in the USA and France.

They are now asking people to sign a petition to make the drug available in the UK.

Leah said: “There have been trials at hospitals here but they’re closed now.

“We are trying to get it available here but time is of the essence for Ella, she really needs to start the treatment now which is why we are trying to raise the money to travel to Paris as soon as possible.

“The first round of treatment costs about £10,000 but she will then need top ups every four months which will cost around £1,500 a time.

“Hopefully, with the help of Nicky Morgan and the petition we can make it available here soon too.”

Loughborough MP Nicky Morgan told the Echo: “Since Ella’s family got in touch last week I have been following up with Secretary of State for Health Jeremy Hunt and the drug company whose big thing now is getting it licenced.

“It’s a really awful and tragic situation for this family and we are trying very hard to get this drug licenced or to extend one of the trials and get Ella onto it.”

To donate to Ella-Rose’s fund-raising appeal, visit:

To sign the petition, visit: and search ‘SMA Fight For Life’.

Source: Family raising £10000 to help extend baby Ella’s life –

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