Rosie is rare.
In fact, there are less than 50 people here in the UK with Nemaline Rod Myopathy. Less than 50. And today we are celebrating Rosie’s rarity as it’s officially Rare Disease Day!
Rare conditions affect over 30 million people worldwide. Every year, on the last day of February, over 85 countries take part in Rare Disease Day with the aim to raise awareness about rare conditions and their impact on patients’ lives.
We were thrilled when Heather from Muscular Dystrophy UK asked us if we wanted to take part in their national campaign to help raise awareness of this special day for their charity. We were even more delighted to actually see Rosie’s beautiful little face and our story being shared on their website and social networks this morning!
The theme around Muscular Dystrophy UK’s Rare Disease Day campaign is positivity, pride, and togetherness
These link through to our story posted on the Muscular Dystrophy UK website
‘Alone we are rare, together we are strong’
I love this campaign strapline, and the words ‘together we are strong’ really resonate with me.
A few months after we’d been given Rosie’s diagnosis we found a private Facebook group which I requested to join. This group has existed for a number of years and is a community supporting people living with Nemaline Myopathy or members of families dealing with someone with the condition.
On August 19, 2015 I went from ‘diagnosis isolation’ to having 580 new friends who all understood what we were going through. We no longer faced this journey alone trying to figure everything our ourselves. Iain joined the group a couple of weeks later.
Today the group has just under 760 members and we feel like we’ve made some best friends for life, despite the fact we’ve never met any of these families in person and live hundreds, even thousands of miles away from one another!
Couple this with the fantastic resources and amazing people at Muscular Dystrophy UK alongside many other amazing charities and national and local services and of course family and friends and even their extended families and friends, and Iain and I feel blessed to have so much help, love and support for Rosie. We now graciously accept any help we are offered, because we learnt the hard way that we simply can’t do this alone.
Together we can be strong for Rosie.