Dr Sheonad MacFarlane set up the Family Fund, Eilidh’s Muscleteers, for her daughter Eilidh who has spinal muscular atrophy (SMA). She hopes to raise as much money as possible to fund research into potential treatments.
Eilidh was born in 2009 Sheonad, noticed something different in Eilidh’s development the following year: she had started crawling and then stopped, she wasn’t bearing weight when she was held up, and when she waved at people her arm would drift down.
I took Eilidh to see a neurologist. He thought she could have lower limb weakness because she was born breech, and wanted to see us again in three months. When we went back, he said we should investigate muscular dystrophy or SMA. Neither of those conditions had crossed my mind; I was in floods of tears as I knew what that meant for Eilidh, for my family.
We heard a few days later that it wasn’t muscular dystrophy and had to wait another week for the genetic results before SMA (type 2) was confirmed.
So on that day, Thursday the 27th May 2010 we received a diagnosis that changed our lives. Fortunately a neuromuscular care advisor was there when we heard the diagnosis. She visited us at home shortly afterwards and guided us gently through the first few weeks, showing us that a bright and positive future was within our reach despite Eilidh having a life-limiting neuromuscular condition.
On the day we started on our journey with SMA I was heartbroken and without hope. I was lost. Eilidh kept me going with her smile and joy, and I started my blog as a way to tell my story, to give me hope and connect to others in a similar situation.
With it being nearly 5 years since her diagnosis, it’s time to move forward and maintain our hope of a better future, Hope of a fun and happy family; hope of continuing research into the science and treatment of SMA; hope for a brighter future for those living with SMA and other neuromuscular conditions.
Eilidh’s Muscleteers will help raise awareness in their local town of Giffnock, near Glasgow, while raising vital funds supporting the work of the charity.
How you can help
- You can visit their Facebook page to keep up to date with their progress and upcoming events
- Follow them on Twitter
- Read Sheonad’s blog.
Setting up a family fund like Eilidh’s Muscleteers is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.