A fundraiser has been organised for a little Chesterfield girl who has Batten Disease.
Batten disease is a very rare inherited degenerative condition that affects between one and six babies each year in the UK and eventually leads to loss of vision, ability to walk, talk and hear, and eventually life.
A drug called Brineura could prolong her life by as many as 20 years but it is not available on the NHS and costs around £500,000 per person a year.
A decision on Brineura's long-term effectiveness and whether it could be made available on the NHS was delayed last month.
Grace’s mum, Izabela, of Cordwell Avenue, Newbold, told the Derbyshire Times last month: “We do not know how much time we have got. For us, it is absolutely crucial to get this treatment now. We just do not have time to waste.
“At the moment our lives have been turned upside down. It has been absolutely devastating news for us. My heart has broken into thousands of pieces and I am just losing every piece every day. She is my world.”
While a NICE spokesperson said: “After the NICE Highly Specialised Technologies committee meeting held on 25 July, NHS England and the company have agreed with NICE to undertake further work on the value proposition of cerliponase alfa (Brineura) for consideration by the committee. We envisage this work will be completed in the near future. NICE will not issue draft final guidance on this topic while these discussions are ongoing.”
A fundraiser for Grace will be held at The Moonrakers pub in Newbold at 1pm on Sunday, September 29.
There will be live music, a bouncy castle, face painting, a tombola, games and food and drinks.
*Search ‘Fight for R Grace’ on Facebook and Twitter to give your support.
*If you would like to make a donation to Grace’s campaign, visit www.crowdfunder.co.uk/fight-for-grace or paypal.me/FightForRGrace