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Family of Chesterfield girl, 4, who has fatal Batten Disease, plead for 'life changing treatment'

The parents of a little girl from Chesterfield are desperately trying to raise money to fund a treatment, which they believe could prolong their daughter's life.

4-year-old Grace Thompson, was recently diagnosed with a rare condition known as Batten's disease. The condition will get progressively worse and could end her life before she becomes a teenager.

4-year-old Grace Thompson Credit: ITV Calendar

What is Batten's disease?

Batten disease is the common name for a broad class of rare, fatal, inherited disorders of the nervous system.

Common symptoms for most of the forms include vision loss, seizures, delay and eventual loss of skills previously acquired, dementia, and abnormal movements.

Children with all forms of Batten disease have a greatly shortened life expectancy.

Those who are diagnosed with the condition tend to only live until about the age of 10 or 12. But there may be some hope for Grace.

Although there is no cure. her family say the drug Brineura could hold back her symptoms and extend her life up to 30 years. They are pleading that the drug, which costs around £500,000 a year, be available on the NHS.

  • Katie Oscroft has more on the story:

Crowd funding page for Grace's treatment: https://www.crowdfunder.co.uk/fight-for-grace