Can you help us raise £500,000 to help fund potential life saving treatment for beautiful Florence?

Florence has high risk acute myeloid leukaemia which means that standard treatments available on the NHS are unlikely to be successful. This means we need to work hard and fast to ensure we have the funds ready to ensure she receives the right treatment if she needs it. 

#Bemorefab

Our incredible, smart, kind, beautiful little girl needs your help.

On the 13th of May our baby girl was diagnosed with Acute Myeloid Leukaemia (AML). 💔

Only around 100 children a year in the UK are diagnosed with AML, making it one of the rarer forms of Leukemia in children. Two weeks into her treatment we found out that Florence was in the 'high risk category' and since then further genetic testing has confirmed a rare gene rearrangement that affects less than 10% of children with AML. The prognosis for these specific gene mutations is very poor- meaning we have to work hard and fast to get the right treatment.

As you can imagine, for our whole family, our world has been turned completely upside down. It is the type of devastating news that you just can't comprehend happening to your child.

In these last 5 weeks of hospitalisation Florence has demonstrated more strength than we knew possible. She has been through more in this time than most adults will in a lifetime: operations for Hickman lines, chemotherapy, lumbar punctures, bone marrow aspirations, infections, feeding tubes, hair loss, heart scans, MRI scans, the list feels endless. Despite all of this, Florence is fighting with every ounce of her being and doing it with a smile on her face as much as possible. She is often more worried about making sure that the other children on the ward are okay than she is about herself.

This is all very private information that we did not want to share publicly but we now have no choice, we need help. We will do everything in our power to help save our beautiful princess and what we need to do now is ask for the kindness of others.

The best treatment option Florence currently has available to her is a bone marrow transplant that she will have in approximately 5 or 6 weeks. They have searched the database and she does not currently have a complete match.

Therefore, we need as many people as possible to register to become bone marrow donors as soon as possible to give her the best chance of finding a match. We will be starting a campaign with our friends from the ward, whose daughter is in the same situation, to raise awareness about how simple it is to register and the ease of the procedure. We ask that when you see any information about our campaign that you share it as widely as possible.

As well as trying to generate more bone marrow donors we are also starting this fundraising campaign. Due to Florence's unique genetics, the chance of the transplant not being successful is significantly higher than in other children with AML. Realistically Florence's best option at that point would be Car T-cell therapy. This treatment is not available on the NHS and would potentially cost in excess of £500,000.

This is obviously a huge amount of money and we would be relying on the help of predominantly large business organisations as well as friends, family, strangers and charities. Because there is such a high likelihood that the transplant will be unsuccessful, we need to start fundraising for the alternative treatment ASAP. In the eventuality that the first transplant was successful and Florence didn't need other treatment, then the money would remain with a third party organisation until a point that we were confident she had little chance of relapse.

So we are asking people to share our story as widely as possible in the hope of finding a donor and helping to generate potentially life-saving funds. Even if you are not a match for our daughter, you may help to save the life of someone else.

If your are over 30, you can register to become a donor at:

https://www.dkms.org.uk/register-now

Or

If you are under 30:

https://www.anthonynolan.org/help-save-a-life/join-stem-cell-register

The support we have received already is overwhelming to say the least. We are so thankful to everyone that has offered to help and for all the well wishes. We had obviously really hoped that it would not come this point where we need to share our story publicly, but we will stop at nothing to get Florence better.

Fundraising through the Grace Kelly Childhood Cancer Trust

Florence's family have made the decision to continue their fundraising for Florence's medical treatment through the suppport of the Grace Kelly Childhood Cancer Trust. By fundraising through the charity, it means that tax payers' donations are eligible for gift aid and some organisations may be able to offer match funding. The original crowdfunding page on Justgiving set up by Florence's family already has incredibly raised almost £250,000. It is amazing what so many generous people can do. These funds will help to cover some of the costs that Florence's family will face in seeking treatment abroad and also to cover contingency costs should she need more complicated treatments or prolonged hospital stays as well. 

If for any reason the treatment is not needed by Florence, the funds will be used to fund research into childhood cancers. 

#bemorefab

Grace Kelly Childhood Cancer Trust, Registered Charity Number 1167783