Abbi’s Story – Parliament


Parliament Reception


On the 6th May, the Brittle Bone Society held a Parliamentary Reception in the Houses of Parliament, as part of the Brittle Bone Society’s 50th anniversary celebrations. Generously sponsored by Lord Shinkwin, who has OI himself, the Reception brought together various healthcare professionals, senior politicians, and was held to present Achievement Awards to a number of NHS Trusts and Hospitals, for excellence in Paediatric services, Adult care, and research and innovation in OI. Each award was presented by an MP accompanied by a BBS member, including your very own BBS guest bloggers for the year – Shani, Samantha, Gemma, and myself.

The reception was a huge success, with a great turnout of BBS members, supporters, peers from the House of Lords and MPs. It was a real honour to present the Achievement Awards to the doctors who attended to represent their NHS trusts, each of whom are known and loved by so many of us in the OI community, and who have dedicated their careers to helping people with OI not just to live, but to thrive, achieve, and aspire.

It was also fantastic to catch up with so many familiar faces, including 5-year-old Max, who came along with his mum Leanne to present one of the awards, and was given his very own Houses of Parliament teddy bear by one of the MPs!


Chaos at Westminster Palace


Despite the grandeur of Westminster Palace, it’s never a true BBS event without at least a few of us causing chaos. My mum set the bar high when, upon being asked at the entrance whether she had any sharps in her handbag, she presented the security guard with her miniature Swiss Army knife keyring, at which point she was classified as an ‘IC1 female in flowery dress with unlocked blade,’ and had to be escorted off to have it confiscated by armed police. “At least it’s not locked,” said the policeman, “Otherwise I’d have had to arrest you.” Oops.

Two hours later, on our way out, more chaos ensued – with Yvonne Grant trying to come down in one lift, Gemma trying to go up in another, my mum and me stopping to chat to her MP, and Leanne and Max having disappeared into the gift shop – our exasperated Palace escort bellowed, “EVERYBODY STAY WHERE YOU ARE.” A passing Angela Eagle looked slightly aghast at the scene. We did eventually all make it out in one piece, although I’m not sure we’ll be invited back – sorry, Lord Shinkwin!


BBS 1958 and Present Day


When she’s not being escorted by armed police, my mum, Jane, was actually one of the very first members of the Brittle Bone Society, back when it was set up by Margaret Grant in 1968. Back then, my mum and her family felt like they were the only people in the world living with OI. She still remembers meeting other people with OI for the first time in Walsall, in the late ‘60’s, and showing off their double-jointed party tricks.

In an age of Facebook and Google, it is now much easier for families with OI to research the condition, and to connect with other OI-ers, but the Brittle Bone Society remains a lifeline not just to new parents, but also to those of us who’ve been living with OI for decades. After dinner and drinks on the Southbank that evening, with Gareth and me ‘hitching a lift’ by holding on to the back of Gemma’s chair, and Richard and Shani nattering away behind us, I couldn’t help but reflect on how truly lucky we are to have one another. The doctors we recognised at Parliament are fantastic, but I also owe so much to the experience, understanding, and advice I’ve received from other BBS members over the years.


Thank You


There are no words for the feeling that comes from getting to spend time with our wonderful, crazy, beautiful OI family; the feeling of total comfort and familiarity; the feeling of being, for a few hours, totally ‘normal’. Thank you so much to Lord Shinkwin and the Houses of Parliament for hosting us, thank you to the doctors who work so tirelessly to help us reach our potential, and thank you to the Brittle Bone Society – for everything.



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