This statement was read outside the Dáil by Lorraine O’Malley, mother of Grace O’Malley a young girl from Mayo suffering from SMA. This was after an AV presentation in Leinster House with a cross-party group of TDs.
Hello my name is Lorraine O’Malley, I live in Robeen, Hollymount, Co. Mayo.
I am Grace O’Malley’s mother. We are here today on behalf of Grace and all SMA sufferers and their families in Ireland. We urgently require a life changing drug called Spinraza to help improve and save the lives of SMA sufferers.
This time 9 years ago I had never heard of SMA and, unfortunately, ever since we have had to watch the devastating effect it has had, on taking hold of our daughters’ life.
We have watched the progressive weakness in her body take over, while her brain function remains fully aware of everything. We have had to watch every hospital admission she has had with a chest infection, lead us to uncertainty as to whether she will come out of the hospital alive.
Things in everyday life are now an impossibility for Grace and leaves us doing things for her like putting toothpaste on her toothbrush, brushing her hair, dressing her and hoisting her to the toilet on a daily basis.
Grace is unable to scratch an itch on her body and unable to turn in the night having to call through a baby monitor for us to come downstairs to do, she is unable to read a book anymore without propping her hands and it is just devastating to watch. Only Tuesday last week, Grace came home so tired and weak that she was unable to finish a paragraph on a book report she had to do for homework which lead me, her mother, having to write for her as she dictated to me. Grace has to be taken out of class twice daily to be hoisted out of her wheelchair in order to try and prevent pressure sores and give her a break from sitting her in wheelchair for over 5 hours continuously.
Grace puts up with her daily use of assisted breathing technology and physio routine at home and also has so many various appointments on a monthly basis together with having to deal with spinal correction surgery here in Dublin every 4-6 months which is more than an average 9 year old has to go through in their life.
What we want for Grace and all SMA suffers is to possibly increase her independence and, most importantly, to give Grace and all SMA suffers their basic right to life. Let me put this into context, everyone knows motor neuron disease which is sadly known as a 1000 days of the body shutting down, the bodies of SMA suffers shut down over a short life time for them, it is categorically the worst neuromuscular condition that anyone could be suffering with and is the number one genetic killer of infants.
We received Grace’s devastating diagnosis when she was 22 months old. We left the Consultants office in Mayo being told there is currently no hope or treatment. We are here in front of you because NOW there is hope…… and SPINRAZA is the ONLY option.
If the HSE and Minister fail to give this drug, you have to understand, they are standing back and letting all our SMA sufferers in Ireland die.
We have no other hope or options and we all feel that money should not be an obstacle when it comes to saving lives.
Time is unfortunately not on our side with SMA, as each day, week, month, and year that goes by, brings us closer to lives ending. We can not and will not sit back and watch this happen.
We can only see a bright future for SMA suffers if they begin the Spinraza treatment sooner rather than later.