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?

Can you do a fundraising event or simply donate? Whether you want to donate to the site or directly to us if up to you, we will be setting up an account solely for Ebonie where all monies will be deposited.

If you want to donate directly to us please contact me for account details.

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!

UPDATE:

In the last couple of weeks, ebonie has been accepted onto a trial at Great Ormond Street Hospital..she has had many tests and treatments/procedures for this, which have made her quite poorly at times..her disease came back also but again has now been cleared with intense spinal chemo. All being well she will be admitted in september to participate in the trial. Its very new and we‘re hoping and praying that it works... We have extended the time frame for fundraising and will continue to raise funds for ebonie.. we know that the medication Dasatinib is not funded for her and will know when/if she needs this in october/november...

thank you for your continued support ❤️