A letter has been sitting inside me more or less since Eilidh's diagnosis, but it's never made it to paper. I have thought about it often, pondering what can be done, but the words have never been penned. I regret that it has taken so long to write and longer to deliver to the intended recipient, but living the day-to-day with SMA is my priority. Perhaps this isn't my role - my "fight" - within the SMA community: there are others who can have the passion, dedication and time to devote to the cause, but I felt that I needed to make a contribution, however small it may be.
The letter has made it to paper now - just last night - and will wing its way to Number 10 today: just to give them a "heads up" - although I wonder if anyone will read it - I sent an email too (just for good measure!), introducing myself and our story, hoping that someone will take the time to read the letter when it arrives.
"I am a wife, a mother and a doctor; I am also carer to my daughter Eilidh who has spinal muscular atrophy grade 2. She teaches me about living with SMA..."
This, perhaps, is not my "fight" but I hope that it will support someone else's fight, someone who lost their precious little star to SMA, and hope is a wonderful thing to hold on to.