Inspirational twin sisters living with one of the rarest conditions known to medicine

Rachel McNabb

Reporter:

Rachel McNabb

BALLYMENA twin sisters Lucy Fretwell and Zoe Buxton are thought to be one of only three sets of twins worldwide who have a debilitating condition which is turning their muscles to bone.

Lucy and Zoe were diagnosed at the age of eight with fibrodysplasia ossificans progressiva (FOP), an ultra-rare disease affecting around 1 in 2 million people worldwide.

They are the only two known cases of FOP in Northern Ireland and have been living with the extremely rare genetic condition since birth.

Despite this the twin sisters are firm believers in living in the present moment and taking each day as it comes.

The twins, who turn 31 in April, are keen to raise awareness of the disease, one of the rarest known to medicine, which causes the body’s soft tissues to gradually turn to bone, creating a second skeleton. Even a knock or a bump could accelerate the transformation of tissue to bone.

Lucy explained that when she and her sister were born their toes were shaped like bunions, one of the “tell tale signs” of FOP.

However, at the time little was known about the condition, of which there is no definitive treatment or cure available, and the twins were not diagnosed until aged eight.

Zoe explained: “When I was five I fell and broke my arm and it never really healed properly. When we were diagnosed with FOP no-one knew much about it because it was so rare.

“At the time it was much harder for our parents as they really took the brunt of it because we were children.

“But even now it can still be very hard because we are the only people with FOP in Northern Ireland.”

Lucy added: “Back when we were children there was hardly any information about FOP but one person we were able to speak to was Fred Kaplan in Philadelphia.

“He was the only person who knew much about it and even now if anything goes wrong we can send him an email.

“He dedicates a lot of his time to research into FOP and we are very fortunate to have him.”

The sisters, who attended Slemish College, described what it was like growing up in Ballymena with FOP.

Zoe said: “We are so lucky to have each other but going to school was difficult in the sense that everyone was able bodied and we weren’t.

“We went to Slemish which was such a great college, however, I was quite clumsy so I had to use a wheelchair and it was a bit harder for me because I couldn’t go outside at break times and join my friends.”

When Lucy was 11 she tripped and hurt the back of her neck and the resulting bone growth left her unable to raise her arms above her head.

In the same year Zoe broke her leg and was left unable to straighten it.

Lucy explained that just recently she experienced a flare-up resulting in her jaw locking.

She explained: “Over the last six months I have had a couple of flare-ups and it has been really difficult.

“I had swelling under my chin and I couldn’t open my mouth so I had to have liquids.

“I just kept telling myself that it won’t last and will get better which it did and I am thankful for that because there are people with FOP whose jaws have locked permanently.”

Both Lucy and Zoe share a positive outlook on life which comes from practicing gratitude and not worrying about things outside of their control.

Zoe who has a keen interest in interior design works for Ivy and Gold and lives in Cloughmills with her husband Mike whilst Lucy, a content creator, lives in Ballymena with her husband Michael.

Zoe said: “I couldn’t get a job anywhere. I knew what I was able to do but no-one would take a chance on me. When I got a job with Ivy and Gold I was so grateful.”

For Lucy and Zoe the pandemic has been particularly difficult as they are unable to get the vaccine due to their condition.

Zoe said: "We are normally together all the time but during lockdown we were from different households so we couldn't see each other.

"But if you needed to be looked after and needed help you were allowed to go to someone else's house so I went to my parents. It was hard for me to be on my own.

"Neither of us can get the vaccine because we can't have anything injected into our muscles so we have to be very careful."

The sisters don't know what the future holds for them but they are determined to “live for the now”.

Zoe said: “You can't think too far ahead because we don't know what the future holds for us with FOP.

“We think it is best to live for the now because if you plan ahead too much you are easily disappointed.”

Lucy and Zoe are keen to raise awareness of FOP through their social media channels and particularly want to highlight what signs to look out for.

Lucy said: "A baby with FOP will have toes that look like bunions and some children will have a joint missing in their thumb.

“Spotting these first indicators allows parents to find out sooner rather than later whether or not their child has FOP."

A petition to dedicate funding into research for the condition was debated in parliament at the end of last year.

Lucy said: “Ian Paisley spoke on behalf of us and did such a good job. He fought our corner and we were very appreciative and hopefully it will go through to the next stage.

“At the minute FOP families and friends fundraise but it is extremely hard as there are not that many of us.”

Last year Zoe's husband Mike and his work colleagues from Spar, Doury Road climbed Slemish and raised £600 for FOP Friends.

They are also planning to organise more fundraising events for the charity which is the only one in the UK dedicated to supporting people living with FOP and their families.

The charity actively fundraises to support research into a treatment and a cure for FOP and more information can be found on their website www.fopfriends.com

You can also find out more about Lucy and Zoe by following their Instagram handles which are Lucy Fretwell: allthingsbeautifullymade and Zoe Buxton: alittlebitoflife

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