Our Pal - Elliot K


Contact Details

C/O 27 Cottage Road
Sandy
Bedfordshire
SG19 1BY
United Kingdom


Email Pal


NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Other Information

  • Parents/Guardians - Emma
  • Interests - Star Wars, Underground Trains, Playmobil, cooking & baking, Trains, Nature
  • Favourite Colour - Red
  • Able to read? - Yes
  • Able to use hands? - Yes but has some muscle weakness
  • Visually/hearing impaired? - No
  • Suffers from any developmental delay? - No

Siblings - aged 3 to 16 wishing to receive post

  • Oliver (27/04/2006)
    • Interests:
      Doctor Who, Art, Star Wars
  • Emily (02/02/2010)
    • Interests:
      Drawing, board games, cycling
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About - 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.