Grace O’Malley will benefit from the final night of Mission: Slimpossible! on Friday, March 14.Here’s her story.
Grace’s story
Hi my name is Grace O’Malley. I am a 4 year old girl from Robeen, Hollymount. When I was 18 months old, I wasn’t walking yet, so I started having some tests done. More tests were carried out in Dublin over the coming months and I was diagnosed with a condition called Spinal Muscular Atrophy type II when I was 22 months old.
We had never heard of SMA before. (Besides being the name of a baby milk formula or the old religious magazine which my mum used to sell when she was younger!). So I hope I will make everyone aware of what SMA actually means to me. SMA is a genetic condition and is the number one genetic killer of children under the age of 2. One in 40 people are carriers of of the gene that causes SMA. It is a life threatening motor neuron disease which affects all of my voluntary muscles that are used for activities such as walking, neck control, breathing and coughing. This leads to a highly increased risk of infection of pneumonia and other respiratory infections. So to help me get over what would be a simple cough for another person, I need a lot of ventilation machine work to help me. I have to do my nebulisers on average twice a day, my bipap machine which blows air into my lungs which is basically like physiotherapy for my lungs and finally my cough assist machine which does exactly what it says on the tin… helps me cough. My mum or dad always bring me to my ‘holiday home’ Mayo General Hospital where I get first class treatment now because they know me so well. I always have to get chest x-rays done as my condition is so silent when I have a chest infection. I scream the place down for the first hour while I’m there but then I settle in. My Consultant Dr. Fox even calls me his Grandaughter now he gets to see me so much… as for my mother he always laughs and asks what ‘her diagnosis’ is as she feels she will be a Doctor in her next life
One benefit out of all of it though is my brain is better than perfect. I just love going to playschool and playing with my friends. When I was aged 3, I was lucky enough to get my new super-wheels, my powered wheelchair! Now I can really get around, in certain adapted areas. This benefits my independence greatly. As for other basic needs like turning over in my bed at night, toileting, showering, dressing, picking things up that fall and trying to sit up from a lying position my mum, dad, family and friends even my 3 year old brother steps up to the mark… when I shout loud enough!
Now my mum and dad say I am the luckiest girl around as I don’t get tired walking around and every little and big person want a wheelchair like mine. I am starting big school in September and I’ll be the fastest kid in the school yard so I’m looking forward to that.
I have to do regular physiotherapy which I cannot say I love and I give mum and dad a hard time over doing it sometimes, I have to go into my standing frame every day for at least 1/2 hour and dad plays games with me while I’m in it. I have to try to keep my upper body strength increased with reaching exercises and I also wear splints on a daily basis on my feet. I have 6 monthly check up’s in Dublin to keep an eye on my spine and obvioulsy to check if I have deteriroated and I also get checked in Galway Hospital for my respiratory needs on a 6 month basis.
I would like to thank you all so so much from my heart for helping me to further increase my independence with equipment required like a ceiling hoist for my new bedroom. I just got a new bedroom downstairs in our house, so now mum or dad don’t have to carry me up the stairs all the time. The ceiling hoist will further help with lifting and transfering me as I am getting heavier for mum and dad to carry so I’ll have a clear run/spin from my bedroom into my bathroom and also to transfer me into my wheelchair from my bed or toilet. In time, I will also need a changing bench, but as mam says one step at a time. I do not look too far ahead but I am grateful for all I have. But once again thank you so much with the help towards that first step.
Best of luck to all of you taking part.
Grace.
x
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