Here for Jude

Jude was first diagnosed with AML in 2022, 2 weeks before his 2nd birthday, he faced a grueling schedule of chemotherapy in Cardiff Noah’s Ark for 3 months and having found out that he had a very rare mutation ‘Glis2’, we were told that he would 100% need a stem cell transplant. 

We were then sent to Bristol for his first transplant, Jude was incredible and kept our spirits as high as he could just by being him, he would put on little concerts for the nurses showing off his love of music, Jude was so full of life.  He was isolated in a specialised hospital room for around 2 months which also meant he couldn't be in his big brother Sebastian’s company. Christmas came and went and after 3 months in Bristol Jude was in remission. We were sent home which was fantastic, a little taste of our new normal, multiple hospital trips and often temperature spike stays, but apart from dealing with skin graft vs host he was getting some normality back. Playing with friends, being home, starting nursery school, simple tasks like going to a cafe were all things we used to take for granted, and Jude loved a babychino!!!!!

Then in 2024 after a trip to Disneyland Paris we felt something wasn't right, deep down I think we knew, but after 15 months he had relapsed. Our world crashed around us once again! He would now require a trial for treatment and second transplant. After months of consideration and multiple meetings we had expected to go to GOSH for a brand new trial, due to unforeseen circumstances he was unable to start and later that year we would go to Sheffield for his second transplant. During this time and after considerable research we went to our wonderful consultant Dr Gitanya to try and obtain a very crucial American drug on a compassionate basis, STRO-002, Dr Gitanya was successful in getting the drug and Jude became the first child in the UK to be granted use.

Jude went through a harrowing time in Sheffield, he had an extreme case of gut GVHD which along with PRES saw him transferred to ICU on boxing day. He spent 5 days there until making such a great recovery, which surprised everyone but showed his strength and determination. Devastatingly, after testing his bone marrow we were dealt another heartbreaking blow and told Jude still had Leukemia present. We had spent 6 months in Sheffield away from family and friends, so it was time to get home, nothing could have prepared us for the feeling of him still having Leukemia after all that he had been through.

Once home a decision was made to start chemotherapy again and get time to make a new plan of attack. Judes disease progressed a lot faster than anyone had expected and he passed away surrounded by love 21st April 2025, constant kisses and his favourite music playing throughout his final hours.

Because of Jude we wanted to create a way for grieving parents to continue to raise the flag in memory of their beloved children. From this suggestion, Heartspaces was born and we can create the space needed.

During Judes treatment and since his passing we have been heavily supported by our friends and family, even the wider community have held us close, whilst fundraising has taken place ‘Jude’s Dudes’ has now become his legacy and with that we will continue to fundraise for Latch, the charity that helped us every step of Judes treatment. Without them we wouldn’t have been able to have spent much needed time together as a family of 4.

Make a Donation to Jude's Heartspace Today