On receiving Elsie’s diagnosis our world was turned upside down. We were led to believe there was no positive future for our little girl. We were actually told that she could die at 7! Yes we have had more hospitalisation than most for simple things like chest infections (and a cold is never just a cold!) The whole process has felt a little bit like grieving for us as her parents; grieving the loss of the life we wanted for our little girl. No she can’t walk or stand independently and we could spend our lives feeling incredibly angry at how unfair the whole system is if you’re a disabled child.
However, 3 years on and we know that, whilst we would not have chosen this life for Elsie, it is living with SMA that makes her such a tenacious and determined warrior!
Elsie is just like any other 4.5 year old; she loves Disney and unicorns and anything girly. Even her powered chair is purple and glittery with Disney princesses on!
She battles every day to do things that her friends take for granted but she does it all with a smile on her face and very rarely do you hear her complain.
Living with a child with a disability has opened our eyes to a different world. We have met some incredibly inspirational children and families. On top of that, our faith in humanity has well and truly been restored after the kindness and generosity we have been shown from
strangers all over the world who want to help our princess.
What Elsie is unable to do physically, she makes up in bucket-loads with personality and we wouldn’t change her for the world!