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Ebonie was diagnosed with Philadelphia chromosome positive leukaemia in February 2016, a rare subtype to acute lymphoblastic leukaemia. She underwent very high dose chemo for a year, losing her hair 3 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 into have gruelling chemotherapy and high dose chemo injected into her spine to bring her into remission to them go forward for a bone marrow transplant. For the transplant she had 4 boosts of cranial radiation and 6 rounds of total body irradiation then her brothers cells in January 2018. Unfortunately 4 months after this she has relapsed again in the CNS. Due to the timing of relapse her options are slightly limited.
Most treatments/trials are available to children that are 6 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 due to 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 £3000 & £4000 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.
Please can you help us?
Please can you atleast share this page so that she gets the chance to access this medicine as well as get the treatment she needs to live!
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At this moment in time some very close friends of mine are going through a very time in there family's life.. I aim to raise as much money as i can by doing afew running events with the main one being frankfurt marathon on October 28th 2018...