Hallie was eight months old when in July 2022 she was diagnosed with juvenile myelomonocytic leukaemia (JMML), a rare form of blood cancer. Her mum, Kim, shares her story…
Our beautiful daughter Hallie was born on 17th October 2021, and she couldn’t be more perfect. She is the sweetest little girl there is. The first eight months of having Hallie was just a dream come true. Watching her develop and grow into a cheeky, kind-natured little girl makes me proud every day.
Just before Hallie was nine months old, and a week before we were due to fly to Spain for our first family holiday, Hallie’s dad, Jamie, and I noticed she wasn’t quite right. She was very sleepy, off her food and just very whingy, which isn’t like her. The afternoon before we flew, I took Hallie to our GP as I was very concerned about her, but I was assured she was okay and fit to fly. The next morning, we tried to put our worries aside, as after all, she’d been checked out and we’d been told she was fine.
However, after arriving in Spain, I became even more concerned about Hallie, who was now extremely pale and couldn’t stay awake. Within four hours of arriving, Jamie and I took her to A&E, where numerous tests were completed, including blood and urine.
The 16th of July is a date we will never forget. On what was meant to be the first day of our first holiday, we heard the words “she has leukaemia”.
In that moment, our lives had changed for ever, in ways we never could have imagined.
Hallie was sent to a children’s hospital in Spain, with a specialist oncology department, and was placed in the Intensive Care Unit. There, she was pumped full of medication and had over 10 blood and platelet transfusions. I couldn’t tell you the number of tests she had during this time because it was so many! She had ECGs, echo scans, liver scans, X-rays, countless blood tests and a bone marrow aspiration. She also had two cannulas, a catheter, and was on numerous drips and on oxygen… the number of wires and tubes coming out of our baby girl’s body was a lot for us to see.
A few days after Hallie was admitted to hospital, her incredible Spanish doctor confirmed a diagnosis of juvenile myelomonocytic leukaemia (JMML), a very rare cancer of the blood which affects babies and young children. As she’d been diagnosed in Spain, we were made aware that when back in the UK, the hospital there would have to recomplete all the tests and confirm the diagnosis themselves. And this is what happened - after 10 days in a Spanish hospital, Hallie was stable enough to be flown home. The travel insurance company arranged for a private air ambulance and crew to come and pick me and Hallie up from hospital and bring us back to the UK. Once back on UK soil, we were taken straight to Birmingham Children’s Hospital (BCH). As amazing as the Spanish healthcare was, it was so good to be back in the UK without the language barrier!
We quickly settled into life at BCH, which was made up of constant tests, blood and platelet transfusions and meeting Hallie’s medical team. Hallie had a second surgery which involved a second bone marrow aspiration and fitting of a central line. The staff at BCH were, and continue to be, incredible. Eventually they confirmed the diagnosis and Hallie was officially diagnosed with JMML and that a stem cell transplant is required as this is only potential cure for JMML.
As Hallie grew stronger, she started to come back to us. First was her little cheeky smile reappearing and then she was rolling around again. This sight was just the best for Jamie and me. After weeks of our little girl just lying there, she was slowly coming back. The stronger she got, the less medication and transfusions she needed, and we got to the point where she was stable enough to take her home.
We are currently at home, waiting for a donor for Hallie to have the transplant. We are at the hospital every couple of days for one test or another, or an appointment, but it’s so good to be at home. Watching Hallie playing with her toys and the memories we are making while she is so stable are things that will get us through the next steps. When we go into BCH for Hallie’s transplant, we will be there for around three months, and then after that it’s a long road ahead.
Nothing prepares you for hearing that your child has cancer or any moment after. We are now having to live a new life, one that we never could have imagined, but the hope that Hallie will one day be cancer-free is all we need to wake each morning and tackle whatever that day brings.
Since Hallie’s diagnosis, we’ve received an outpouring of love and support from family, friends and complete strangers asking how they can help. So, off the back of this, Jamie and I have decided to set up Hallie’s Helping Hands, a fund dedicated to research into JMML. This is such a rare disease and so little is known about it, so we want to do our part in helping Hallie and other children who one day may be told they have JMML by raising enough money for a much-needed research project into JMML to be undertaken.
If you are donating, fundraising, or just spreading the word about ‘Hallie’s Helping Hands’, Jamie, Hallie and I can’t thank you enough. No child should go through what Hallie has gone through in the last four months.
Let’s make a difference.
Please note, this page has been set up to fund research into JMML, if you would like to help support Hallie with her treatment please visit her Go Fund Me Page: https://www.gofundme.com/f/rally-for-hallie
Make a donation to Hallie's Helping Hands
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Research Projects Funded
How do leukaemia stem cells talk to the immune system in juvenile myelomonocytic leukaemia?
Fundraising pages
Text CCLGHALLIE to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Hallie's Helping Hands so that your donation is allocated to the correct fund.