“Priscilla-Rose, or Priddi as I call her, was born on 21 July 2020, she is three years old. She is the youngest of five children. I also have three sons who are 6, 10 and 13, and a daughter who is 17 years old.

Prior to Priddi becoming unwell, she was lively, super-active and just a very happy baby. Throughout this ordeal, she has remained unbelievably strong – everyone comments on what a little fighter she is.

All my children were premature, and Priddi arrived at 36 weeks and 6 days, weighing 5lbs. Immunisations were always delayed for my children because of them being premature, and then the COVID-19 pandemic meant we had further delays. The GP decided to give Priddi a double vaccination for her 16 weeks and 12 month jabs when she was 22 months.

Six days after her vaccinations, Priddi was rushed to hospital – to this day, I am convinced it was the double vaccinations that brought on Priscilla’s cancer, although no medical professional will ever admit this.

Priddi had a nosebleed that wouldn’t stop, I called 111 and talked through her symptoms and was asked if I’d noticed any bruising on her body. At the time she was in a baby grow, so I stripped her down and I could see she was covered in bruises – it was like they had appeared out of nowhere. We were taken by ambulance to Basingstoke and North Hampshire Hospital where they did a series of tests and told us Priddi’s immune system was attacking itself.

We spent the next 10 months in and out of hospital – Priddi was projectile vomiting blood, her feet were swollen to the point she couldn’t walk, and she even had blood coming out of her eyes. We were eventually given the diagnosis that Priddi had a severely suppressed immune system. Cancer had been mentioned to us on three separate occasions, but it was ruled out.

I wasn’t happy with the diagnosis that had been given, my mother’s instinct knew it wasn’t right. After doing a lot of my own research, in February last year, I paid to send some of Priscilla’s mouth swabs to a research clinic in Switzerland, and this came back showing a bone marrow abnormality.

In April 2023 Priddi had a bone marrow aspiration at Southampton Hospital and in the June we received her diagnosis of Juvenile myelomonocytic leukaemia(JMML). I had never heard of JMML before Priddi’s diagnosis and neither had any of the other parents I spoke to at the hospital. Because of Priddi’s condition being so rare, consultants from three different hospitals meet to have a panel discussion to agree her treatment plan. It has taken months to get anything in place.

When we received Priddi’s diagnosis, I just knew it was going to be something bad, although I felt a sense of relief after months on end of not knowing what was wrong. It had got to the point where Priddi didn’t blink an eyelid at having a blood test, she’d had so many. She didn’t even cry when she had a cannula fitted and that was tough for me to see – it had become such a normal part of her life, it just didn’t affect her anymore.

The only cure for JMML is to have a bone marrow transplant, and thankfully two of my other children were a match for Priddi. My eldest child, Jessie-Mae was so brave – she was determined that she would be the one to have the transplant so this went ahead on 28 November last year. We spent Christmas and New Year in hospital – everyone there was amazing and made sure no child went without a gift. We helped collect more than 500 donated gifts for the children at the hospital. We are doing the same this Easter and have already collected 100 Easter eggs.

Prior to the bone marrow transplant, Priddi had 10 days of intensive and invasive chemotherapy conditioning to clear out her own bone marrow. It hasn’t been a straightforward journey for us – Priddi has had allergic reactions to a lot of the medication and everything has taken a lot longer than we’d hoped because of the rarity of her cancer. Thankfully, Priddi has reacted well to steroids.

Priddi understands she has lost her hair because she is poorly and she knows we cant see many people because it might make her sick. She is still so young, and that’s enough for her to know.

Last month, Priddi went into remission. We still have a long road ahead, and Priddi is having 28 different types of medication every four hours. We have appointments at the Royal Marsden Hospital twice a week for the next 12 months where Priddi has her bloods taken and platelet transfusions.

Life has been on hold for a long time for our whole family. My other children have been living in one section of the house with their dad’s mum (nanny Sally), and me and Priddi have been living in another section. Her immune system has been so suppressed; we just haven’t been able to risk her even mixing with her siblings. Nanny Sally has been great – helping with meals, school runs, and homework. Everything has taken its toll on my other children, especially one of my sons, who has severe ADHD. I am pleased to say, Priddi is getting stronger and has just started mixing with her siblings again.

We found out about Momentum when Priddi was having treatment at the Royal Marsden Hospital. Sam, one of their Family Support Workers, came up to us, in her warm and welcoming way, and checked how we were doing. Sam has really helped us, particularly me, to open up and talk about things. When I need to have an in-depth conversation with the consultant, Sam will play with Priddi and I know she is very comfortable and happy being with Sam. We see Sam in the hospital every week, she is a rare diamond and has become a true friend, someone I will never forget, even when this nightmare is over for us. We have a lot to thank Momentum for, and when this is all over, we are planning a huge fundraising walk from Scotland to Cornwall.

I will never get over this. Priddi will be in remission for five years, and after that I will always worry that the cancer will come back.

Priddi was due to start school this September, but it won’t be possible. Our hope is that she will be well enough to start the following year, in September 2025. When Priddi’s immune system is stronger, she will join a small nursery, so she gets used to being around other young children in a social setting.

My message to other families who might have just received a rare disease diagnosis would be live each day as it comes. Don’t think about tomorrow, as tomorrow can change. Do your research and try and understand as much as you can. Make sure you have a good support network around you and accept help – that is what friends and family are for.”

Allena is running three marathons this September and Priddi will join her in her pushchair to raise funds for Momentum Children’s Charity. You can support them here https://www.gofundme.com/f/fund-raising-for-momentum-charity