"JESSE’S JOURNEY 22”

Our special little boy, Jesse needs your help..........

On the 16th August 2022, Jesse was diagnosed with high risk Acute Myeloid Leukaemia (AML) which means that standard treatments available on the NHS potentially may not be successful. This means we need to work hard and fast to ensure we have the funds ready to ensure he receives the right treatment if he needs it.

Only around 100 children a year in the UK are diagnosed with AML, making it one of the rarer forms of Leukaemia in children. Two weeks in to his treatment we found out that Jesse was in the 'high risk category' and since then further genetic testing has confirmed that Jesse has a rare gene rearrangement (FLT3) 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.

The news of Jesse’s illness has come as a shock to our whole family. Jesse has always been fit and healthy boy and very rarely poorly, so this news to Zoe and I has left us absolutely devastated and our lives have been turned upside down. The news that we received on that day is something that you never expect to hear about your own child, it is simply incomprehensible.

We are fundraising to help prepare us for the unpredictable next steps in fighting this awful disease and we have to be ready to fight with Jesse.

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Immediately after the diagnosis in Northampton General A&E, Jesse was transferred to Queens Medical Centre in Nottingham, where the next day he would start Chemotherapy and Jesse’s Journey would begin.

After 6 weeks we were told the first round of chemotherapy had not been successful and that the cancer remained in Jesse‘s Bone Marrow - this news was sole destroying and we feared the worst. Jesse’s rare FLT3 gene mutation had prevented the chemotherapy from working and we needed a miracle. That potential miracle then presented itself in the form of a Clinical Drug Trial that was open at Birmingham Children's Hospital. The trial would consist of a 21 day intensive course of Chemotherapy along side and FLT3 Inhibitor Drug called Gilteritinib. Jesse was invited for screening and was accepted on to the trial, despite carrying a bowel infection and a severely aggressive rash that covered Jesse from head to toe. The risk of Jesse surviving this part of his journey would be great, he would have to battle the rash, the bowel infection and 21 days of chemotherapy and also the trial drug which hasn't yet been approved for use on children in the UK - all of this with zero immune system……but we didn't have any other option, conventional chemotherapy would not work on Jesse.

Jesse finished his 21 days on Wednesday 26th of October and despite picking up a chest infection, has again battled though and continues to try and fight of this latest infection…….we now wait for the results to see how the trial has worked on Jesse, the next 2-4 weeks is massive for us all.

The best treatment option Jesse currently has available to him is a Stem Cell / bone marrow transplant (now from an Umbilical Cord only). This can only happen if Jesse’s blood cells recover significantly enough for him to survive the transplant. Currently his blood cells have never been at his level Throughout his journey.

Jesse has been in hospital, Nottingham and now Birmingham since diagnosis on the 16th August and hasn't been home since.

In these last 11 weeks of hospitalisation Jesse has demonstrated more strength than we knew possible. Jesse has been through more in this time than most adults will in a lifetime: operations for Hickman lines, chemotherapy, lumbar punctures, bone marrow aspirations, 8 biopsy's, bowel infection, chest infection, the most severe, aggressive and uncomfortable rashes, feeding tubes, hair loss, heart scans, MRI scans, the list feels endless. Despite all of this, Jesse is fighting with every ounce of strength that he has and doing whilst worrying about upsetting his parents - this boy is simply remarkable and anybody who knows Jesse knows that he has the biggest heart and personality.

Anybody who knows Zoe and I, know that we are very private people and that reaching out and asking for help is something we’ve never done and wouldn‘t ever want to have to do - we now have no choice but to do just that, we need help and lots of it. We will do everything in our power to help save our beautiful boy and what we need to do now is ask for the kindness of others.

Due to Jesse’s unique genetics, the chance of the transplant not being successful is significantly higher than in other children with AML. Realistically Jesse’s best option at that point would most likely be Chemotherapy with an FLT3 Inhibitor Drug Treatment in the US or Far East, potentially Singapore - This type of treatment would depend on whether or not Jesse can have the Stem Cell Transplant. This treatment would not be available on the NHS and would potentially cost in excess of £250,000-£500,000. These Inhibitor Drugs are not licensed for use in the UK on Children - The treatment that Jesse is currently receiving is in 'trial' and Jesse is taking part in that trial.

These funds will help to cover some of the costs that we will face in seeking potential treatment abroad and also to cover contingency costs should Jesse need more complicated treatments or prolonged hospital stays as well.

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

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 Jesse didn't need other treatment, then the money would remain with a third party organisation until a point that we were confident Jesse 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

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 Jesse better.

We also want to raise awareness for the need for more Bone Marrow donors across the UK.

We need as many people as possible to register to become bone marrow donors to give other children the best chance of finding a match. We ask that when you see any information about our campaign that you share it as widely as possible.

If your are over 30, you can register to become a donor at DKMS or if you are under 30 at Anthony Nolan.

Thank you for reading x