Community comes together to get vital help for Ebonie

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Crawley’s community has come together in a huge effort to get life saving medical treatment for a seven year old girl.

Ebonie-Rose Musselwhite needs an expensive course of medication to put her leukaemia into remission so she can take part in medical trials.

Ebonie

Ebonie

“Ebonie was diagnosed with Philadelphia chromosome positive leukaemia in February 2016, a rare subtype to acute lymphoblastic leukaemia,” said a statement from the family.

“She underwent very high dose chemo for a year, losing her hair three times, the ability to walk for a time and had many hospital admissions for infection and low blood counts. In October 2017, she relapsed in the CNS (central nervous system) and again went in to have gruelling chemotherapy and high dose chemo injected into her spine to bring her into remission to then go forward for a bone marrow transplant.

“For the transplant she had four boosts of cranial radiation and six rounds of total body irradiation, then her brother’s cells in January 2018. Unfortunately, four months after this she has relapsed again in the CNS and bone marrow.

“Due to the timing of relapse her options are slightly limited. Most treatments/trials are available to children that are six months post transplant.

“Because of this she may need to go to America to join a trial which is going to cost around £400,000... this will cover all the trial costs, cells, daily care, blood tests, pokes, everything you can imagine needs doing that we take for granted on the NHS. Also it will cover flights and accommodation whilst there.

“Before we know about treatment in America we need to try to get funding for a specific medication targeting the Philadelphia chromosome called dasatinib... our understanding is that rarely the UK will fund this and we will need to pay for it ourselves, the cost being between £3,000 and £4,000 a month. This medicine will be needed for months but possibly even years.

“Our aim is to get Ebonie into remission ready to start a trial whether it be in the UK or America.”

Ebonie’s family are currently in talks with hospitals in the US. Meanwhile, friends, family and well-wishers have rallied round to collect donations and arrange sponsored events and fundraisers for Ebonie.

Confirmed events include:

June 29 - Dance for Ebonie at Three Bridges Football Club, 7pm to midnight. There will be a live band, disco, great prize raffle, and a celebrity appearance.

July 1 - Jimmy Chop Chop Free Haircut Day for donations to Ebonie’s Fund.

July 6 - CJ’s Cafe Quiz.

July 8 - Tough Mudder.

July 10 - Worth Park Playgroup Teddies Picnic.

July 14 - Pound Hill School Jumble Sale.

July 21/22 Charity Weekend at The Knight Pub, Pound Hill.

For more information or to support Ebonie, visit: https://www.facebook.com/EbonieroseM/ or: https://www.justgiving.com/crowdfunding/ebonie-rosem

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