Huntingdon-based apprentice raising awareness of rare syndrome after friend's death


Micah Gillings, passed away from a rare genetic condition called Marfan syndrome. - Credit: Vanessa Skinner

A Huntingdon-based hairdressing apprentice is raising awareness about a rare genetic condition called Marfan syndrome.  

Plamena Rafailova, was studying for her Level 2 hairdressing apprenticeship at Cambridge Regional College when she experienced the sudden loss of one of her closest friends to the condition which affects one in 100,000 people.

In light of the loss of her close friend Micah Gillings and the need to raise awareness of this invisible condition, Plamena and her friends set up a Just Giving page to raise funds.  

To encourage donations, the group of friends collectively raised £200 which they donated as a prize incentive for those supporting their cause.  

This has resulted in them raising almost £5,000 for the Marfan Trust. On April 2, which would have been Micah’s birthday, a winner will be selected at random from those who have donated. 

Plamena said: “It has really helped me to see such kindness.  People my age have been donating significant sums to raise awareness of this hidden illness. 

"It has shown me that people really cared about Micah. Following the draw, we will continue to raise awareness through further fundraising activities, such as the Cambridge Marathon this October. 

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"Losing Micah really gave me a different perspective, it has made me realise that it doesn’t matter what I choose to do in life, so long as I do my best on whatever path I take.” 

Researching the condition, Plamena and her friends discovered that Marfan syndrome is a disorder that affects the body's connective tissue, which provides strength and flexibility to the main structures in the body such as bones, ligaments, muscles, blood vessels and heart valves.  Marfan syndrome can often causes a range of abnormalities. 

The abnormalities often go undetected meaning that those affected may not even know there is a problem. Individuals with Marfan syndrome usually have characteristics such as being tall and slender, with long fingers and toes. 

If you would like to find out more about Marfan Syndrome and support Plamena with raising awareness visit: