Our Pal - Elliot K

Story Written 2021

Just before Christmas 2020 Elliot was diagnosed with leukemia! Already having other lifelong issues that affect all areas of his life, this is the last thing he needed.

Elliot was born in the summer of 2007. From the start he had trouble feeding and it soon became apparent that his physical development was not what it should be. After several years of back and forwards to the GP he was diagnosed with Ehlers-Danlos Syndrome which meant his muscles were weak and his joints were hyper-mobile. He was also diagnosed with neuromuscular involvement with his muscle problems. As time went by we found him to be dyslexic too which impacts his learning. Also, he was diagnosed with ASD, so now his problems covered pretty much every aspect of his life and development.

As he has grown his muscle tone has deteriorated and he began to use a wheelchair to cover any distance and use postural support setting at school. Eventually we managed to get funding for a powered wheelchair and invested in a wheelchair accessible vehicle so he could be more independent, and we could fully enjoy our family time and trips away.

Of course this became increasingly limited against the background of the COVID-19 pandemic. But everything was in place to make his teenage years easier for him and for us as a family.

Then Elliot developed an unusual swelling around his face. With treatment it went, but then it came back along with a rash on his legs. This time we got the hospital to review him and the results of the test shook us to our core. Leukemia! Elliot never gets a break. So now he is undergoing chemotherapy, enduring multiple hospital admissions due to neutropenic infection where he is isolated from his siblings, due to the COVID risk and facing further physical debilitation as the chemotherapy takes its toll on his body.

His schooling is almost completely on hold apart from the days he feels well enough to concentrate on an online lesson.

So this is where we are now. Awaiting his immune system to recover enough to undergo another round of chemotherapy and with a further three years of therapy to come. The treatment and being away from home is also having a huge impact on his brother Oliver who is 14, and his sister Emily who is 11. They miss him and having the family home together, they also worry about him a lot.

Update 8th November 2024

Elliot finished chemotherapy earlier this year. The plan is now to try and strengthen his bones. During the treatment he developed osteoporosis and suffered 2 pelvic fractures, 9 spinal fractures, and two arm fractures. He has also developed functional seizures as a result of his treatment. He is also transferring all his care to adult services which is affecting his anxiety and mental health. 

Oliver likes art/ sweets, tea and hot chocolate. 

Elliot likes Star Wars, cleaning, cars especially Ford cars, dodge chargers and fast cars, emergency vehicles, sweets. 

Emily likes football, plays for a girls team, supports Arsenal woman’s team and she Referees too. Emily likes sweets, socks, and fluffy things

Update 25th March 2022

Elliot is still receiving both daily and weekly chemotherapy. He has 3 monthly lumbar punctures. He now has 6 spinal fractures caused by the chemotherapy. So he now needs three monthly infusions to support his bones. He manages to go to school a bit more but is repeating a year.

Thank you for all of Elliot and his sibling’s post. They really do bring smiles and make the children feel special.

Update 14th June 2021

Elliot is still receiving chemotherapy and blood and platelets transfusions and still spending a lot of time in hospital with complications and or infections. His siblings continue to put up with change at very short notice and us disappearing.