My name is Dawn Wilbur: aged 54 and proud mother of a happy, fun, sporty, typical ‘woteva’ teenage son. We are extremely blessed to live in a picturesque village in Cheshire. I live with type 3 SMA.
My intelligence and cognitive abilities remain unaffected (guess that’s a matter of opinion!?).
I was able to crawl, stand, walk, run like any other child unaffected by disability. As a result of an accident aged 11, I could no longer walk, consequently the SMA symptoms progressed.
My brother, Brian, type 2 SMA, took his life aged 27 due to lack of social and healthcare provision.
Living with type 3 has had an enormous impact on my life affecting my health severely.
I receive 24/7 plus healthcare, e.g., I cannot get out of bed or dressed, washed, etc., without personal care assistants performing physical tasks. Have no muscle power to raise my arm to feed myself. Hoists, wheelchair, cough assist machine, lymphatic drainage, adapted car, physiotherapy are essential for my everyday life.
Spinraza will be positively life changing for myself… and my son – even if Spinraza enables me to elevate my arm high enough to feed myself again or have the physical power to put my arms around my son and give him a hug (something I have been unable to do since he was 2 years old) or have the dexterity and power in my hand to write again.
There was never a hope prior to this medication being released… that better health in the future was an option, the shear hope of me being able to give my future grandchildren the hugs I missed out on giving my son, and the potential to be a part of their lives in the best possible way, has given more hope than you could even imagine Please consider not just my own life but that of my family At 54 years old, I feel time is of the essence. I feel like I have endured this devastating, demoralizing and quite often demeaning disability. Every day counts in all our lives.
All SMAers deserve the choice to have this proven miracle cure treatment.