S&D are holding an in-house ice bath challenge across the company, to help raise money for Jesse. We are raising money on behalf of Jesse and his family to help fund his lifesaving treatment.

Any support is highly appreciated, please read below Jesse's story.

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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.

Only around 100 children a year in the UK is diagnosed with AML, making it one of the rarer forms of Leukaemia in children. Two weeks into his treatment, Jesse's family 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 they have to work hard and fast to get the right treatment.

The news of Jesse’s illness has come as a shock to his whole family. Jesse has always been fit and healthy boy and very rarely poorly, so the news has left the family devastated, as hearing such awful news about your own child is simply incomprehensible.

Jesse's family are fundraising to help prepare them for the unpredictable next steps in fighting this awful disease.

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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 Jesse's family were told the first round of chemotherapy had not been successful and that the cancer remained in Jesse‘s Bone Marrow - the sole destroying news left the family fearing the worst. Jesse’s rare FLT3 gene mutation had prevented the chemotherapy from working and they 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 Jesse's family 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 through and continues to try and fight of this latest infection…….the family now wait for the results to see how the trial has worked on Jesse, meaning the next 2-4 weeks is crucial.

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.

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 the family 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.

Because there is such a high likelihood that the transplant will be unsuccessful, Jesse's family now 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 organization until a point that we were confident Jesse had little chance of relapse.

Jesse's family are asking people to share their story as widely as possible in the hope of finding a donor and helping to generate potentially life-saving funds, as well as raising 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. Jesse's family ask that when you see any information about their 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 Jesse's story.

Thank you for your kindness - all donations are very much appreciated.