James Keenan, born in 2006, lives with his parents and twin brothers in South West England in Torquay. He loves Lego, Star Wars and Manchester United. His parents, Sean and Liz, describe James as having a ‘very bright, inquisitive nature’.
When he was aged four Sean and Liz noticed he wasn’t progressing in his gymnastics class.
His core strength for things like rock n rollers (sit-ups) was just not there. We asked doctors, but were told he was a slow developer and would catch up.
When James started school his teachers also noticed he was struggling with getting up and down from the carpet and was walking flat footed. Again doctors told the family it was just his gait and that he would grow out of it.
Sean and Liz took James on holiday to Ireland where a physiotherapist family friend noticed he had significant muscle weakness. Returning to their doctors they were sent to have blood tests four days before their twins were due to be delivered.
We took him for the blood test on 23.12.13 blissfully ignorant of what was to come.
Our whole world was then shattered when we had a phone call that same evening reporting high Creatinine Kinase levels.
Sean and Liz had no means of knowing what this meant as hadn’t yet met with a consultant. The caller advised they couldn’t elaborate but it was something to do with muscles.
We were left to google high Creatinine Kinase levels on the internet to read the devastating truth, Duchenne muscular dystrophy.
The family discovered MDUK through their research and saw all the efforts other fundraisers were involved with.
19 months in we feel ready to make a positive step forward to put our all into the fight against DMD.
Since they became a family fund in 2015, I Fight For James have raised an incredible £50,000. From events such as skydiving, The London Marathon, Christmas fairs, team zip wire and organising their own Move a Mile for Muscles event at the Torbay Velopark.
How you can help
Setting up a family fund like I Fight For James is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.