It's One of Them!: Living with Spinal Muscular Atrophy

By Grace Saunders

Grace Saunders and her brother Ben were both born with the genetic disorder spinal muscular atrophy type 2/3, SMA. From her happy childhood growing up in Hertfordshire, enduring painful operations, to becoming a mom and a wife living an independent life in Coventry.

Her extraordinary story of strength, not only coping with a severe physical disability, but being victim to domestic violence. Graces story also involves drugs, murder, the police investigation that was Operation Ore and the death of her brother, aged thirty.

This is a womans struggle for a normal life, independence, and remarkably, having a healthy baby girl when she was told she would never be able to have children. She coped many years, being a single mother with the help of her family and personal care assistants.

She writes about her education, care, and funny stories about the world of Internet dating. She tells her story with, honesty, humor, and heartfelt emotion, Grace shares the highs and lows she has faced and has come out the other side, although a little bruised, stronger than ever, and still smiling.

Graces attitude to the life she has been dealt with is, as she says,
Its One of Them!

• Language: English
• Publisher: AuthorHouse UK
• Release date: Dec 10, 2014
• ISBN: 9781496997548

Grace Saunders

Sometimes in life you seem to travel full circle with people coming and going in your life. Grace is one of these people. Having met at the age of eleven years old, we had that close bond as friends throughout school and the formative teenage years. Sharing and experiencing the music and fashion of the eighties. Eventually going to the same college but somehow following different paths for the next twenty-one years. I have always believed that people have soul mates, but you have to encounter many obstacles living life before fate brings you together. This is precisely what happened with Grace and me. Having spent so many years with no contact, we were eventually reunited, and I am proud to say have since married. The expression “It’s one of them,” was something I had not heard until I moved to Coventry. I hear it a lot from people I work with, and I have to say Grace uses it a lot. But it is so fitting to Grace’s attitude toward her life and past experiences. I never hear Grace moan about what she has been through, for I think it has made her stronger and more determined to succeed in whatever she decides to do. I am very proud of my wife and know this book will inspire many people to make the most of life. Learn from your mistakes, remember to have a wicked sense of humor, and love the people who treat you well. James Saunders

Book preview

It’s One of Them!

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Living with Spinal Muscular Atrophy

By Grace Saunders

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AuthorHouse™ UK

1663 Liberty Drive

Bloomington, IN 47403 USA

www.authorhouse.co.uk

Phone: [phone]

©

2014 Grace Saunders. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 11/25/2014

ISBN: 978-1-4969-9753-1 (sc)

ISBN: 978-1-4969-9752-4 (hc)

ISBN: 978-1-4969-9754-8 (e)

Library of Congress Control Number: 2014921199

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

About the Author

Prologue

Chapter One Where Life Begins

Chapter Two In This Life

Chapter Three Live To Tell

Chapter Four This Used To Be My Playground

Chapter Five Who’s That Girl

Chapter Six I’m So Stupid

Chapter Seven Rescue Me

Chapter Eight Little Star

Chapter Nine The Beast Within

Chapter Ten Causing a Commotion

Chapter Eleven Hello and Goodbye

Chapter Twelve Girl Gone Wild

Chapter Thirteen Don’t Tell Me

Chapter Fourteen Keep it Together

Chapter Fifteen Till Death Us Do Part

Chapter Sixteen Take a Bow

For Paul

ABOUT THE AUTHOR

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Sometimes in life you seem to travel full circle with people coming and going in your life. Grace is one of these people. Having met at the age of eleven years old, we had that close bond as friends throughout school and the formative teenage years. Sharing and experiencing the music and fashion of the eighties. Eventually going to the same college but somehow following different paths for the next twenty-one years.

I have always believed that people have soul mates, but you have to encounter many obstacles living life before fate brings you together. This is precisely what happened with Grace and me. Having spent so many years with no contact, we were eventually reunited, and I am proud to say have since married.

The expression It’s one of them, was something I had not heard until I moved to Coventry. I hear it a lot from people I work with, and I have to say Grace uses it a lot. But it is so fitting to Grace’s attitude toward her life and past experiences.

I never hear Grace moan about what she has been through, for I think it has made her stronger and more determined to succeed in whatever she decides to do. I am very proud of my wife and know this book will inspire many people to make the most of life. Learn from your mistakes, remember to have a wicked sense of humor, and love the people who treat you well.

James Saunders

PROLOGUE

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I turn 45 next year and that’s quite an achievement for somebody like me. People moan about turning 40, I didn’t complain once, I embraced it! I’m an ordinary middle aged woman, a Mum and a wife; I have a nice home, pets and a car. I’ve written this book for a few reasons; the first reason is it’s been great therapy, probably better than any counselling. Secondly, I have a story to tell and hopefully it will help others whether they have children with my disability, or if they suffer from the same condition as me, or whether they’ve been through the traumas I’ve been through, but I think there’s something here for a lot of people. Thirdly, this is my side of the story, there are two sides to every story but I wanted people to know mine and more importantly the truth. Everybody has skeletons in their closet and I’ve gone through my fair share of problems and heartache. I’m still here to tell my tales, my tragedies, and my happy days (and hopefully still lots to come); I’m still sane and smiling!

So what can I tell you about me? I like to laugh; I have a very sarcastic sense of humour. I try not to take life too seriously; I’ve learnt to let things go over my head more, I’ve learnt not to complain too much about things because there is always someone worse off than you. I can’t be doing with people who moan about the slightest little things and don’t even get me started on the youngsters of today who really haven’t got a clue. I have never felt sorry for myself, I’ve always said that I wouldn’t be me if I didn’t have this disability, this is me.

I never hear you complain Grace people say. But every day is a struggle and that’s the life I was dealt, so I’ve made the most of it.

I love my music. Music is something I could do growing up; I would always be sat in my bedroom singing into a microphone that wasn’t even plugged in and usually to Abba. I wanted to be Agnetha ‘the blonde one’ or failing that Olivia Newton John. I loved musicals and still do. Fame, Grease, Xanadu were all huge when I was a child and when The Kids of Fame came out I was in my element, I loved it!

I love anything camp, big glitter balls, Kylie Minogue, Eurovision and disco. I’ve always joked that when my time is up I want half naked gay men carrying my coffin and going out to Kylie’s ‘Your Disco Needs You’.

I don’t take a lot of crap, if somebody hurts or says anything bad about me or my family then our relationship is over. I always gave people second chances but not any more, if your so called friends can shit on you, then they don’t deserve second chances. In the past I’ve given people all of me but I’ve hardened up because I’ve had to. I’m genuine, if you want my advice I will give it to you, if you don’t want to hear what I have to say then don’t ask me. If a friend asks my opinion on her dress, if I don’t like it I will tell her, I try to be honest but without upsetting anyone either. I am also very soft and hate confrontation but when something really needs to be said I will say it.

I love my own space and my own company but I also love company too. I love socialising and will talk to anyone, especially after a bottle of wine. I can be the party animal or I can be the quiet one in the corner, depending on my mood and my energy.

I’m a huge Madonna fan and that’s the reason I thought I would use her song titles as chapters. I’ve followed her from the beginning and have seen her in concert a few times and hopefully one day I will see her again.

I’m a massive Marilyn Monroe fan and she’s been part of my life since I discovered her at 15, I read a book about her and was hooked. People always ask me what it is about her that I love. Marilyn was extremely beautiful, a natural beauty unlike today’s celebrities, yes she had a little bit of work done but there was nothing like Botox around then and she was on the larger side, a real woman. She was also very misunderstood, not the dumb blonde everybody thought she was. She was a very lonely person, used and abused by many and I would love to have been her friend and been there for her. I feel some connection with her, I have no idea why.

I have to tell you one weird experience with her. I had a shelf in my bedroom with all her books on and on the anniversary of her death, some years ago the screw for the shelf decided to loosen and all the books fell off, landing on my computer and the floor. The shelf had been up for six years without a problem but the time was 6am in the morning and working it out, that would have been 10pm Los Angeles time, which is where Marilyn both lived and died and is the time they believe she would have passed away. I woke thinking it was an earth quake or something, I was facing the opposite wall and when my Mum came in to see what was going on she said. Your shelf with your Marilyn books has broken. When I told her what day it was she too said it was weird. So Marilyn, if that was you giving me a sign, I heard you!

I’m a very spiritual person too. I’ve been told I have some kind of gift by other psychics but that I just don’t know how to use it properly. I can read Tarot Cards but I can’t do it without looking through a book, once I have read the meaning of the cards I can kind of pick up on what it’s trying to say for that person. I did a reading for a friend once and his sister-in-law was pregnant with twins. Well I told him that two boys would be born in the summer but right up until they were born she was told it was a boy and a girl. No, it’s definitely two boys. I kept saying. I got a phone call from my friend to say the babies had been born and what were they? Yes, two boys!

My dreams are also very vivid too, always mixed up, in colour and I believe that’s how I get some of my messages. For example, I dreamt years ago that Madonna had died and she was on the front pages of all the papers. Two days later Madonna was on the front pages for falling off a horse and breaking some bones. I also get a really weird, sickly feeling when something serious is about to happen. For instance, when my daughter’s Granddad was rushed into hospital and then, on the day he sadly died I felt strange and couldn’t explain it. I have that feeling when something is going to happen but I really don’t know what it is. I also had it a couple of days before my daughters Nana, who had cancer, collapsed and was taken to hospital. I hate getting that feeling now. I definitely have something, I always say that my mind’s open a bit more to things like that because it’s making up for my weak body.

I’m into Astrology; I’m a Pisces and a typical one. A dreamer, constantly living in a fantasy land, imaginative, sensitive, feeling, spiritual, soul growth, suffering, artistic, overly emotional, romantic and poetic, very caring, compassionate and reflective. Every one of those is me. Whenever I meet someone I always ask what star sign they are so that I can get a bit more of an idea about them and definitely in my dating days.

I hope that gives you an idea of the sort of person I am, nothing complex, very down to earth, what you see is what you get, probably too opinionated sometimes but that’s just me, but physical appearance is a whole different story!

CHAPTER ONE

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Where Life Begins

I was born in the spring of 1970. Lee Marvin’s ‘Wanderin Star’ was number one in the charts, the Beatles were about to split. The Vietnam War was going on, Edward Heath became Prime Minister and Jimi Hendrix died.

I was born on the 14th March, 6lb 12ounces, a perfectly healthy baby girl. My parents were working class, my Dad, was an Agricultural Contractor and my Mum, worked for the council. My Dad’s roots are half Yorkshire and half Cockney, his Mum, my Nan, was born ‘within the sound of the Bow Bells’ which traditionally means you were a real Cockney. My Granddad was from up north in Yorkshire, they met after the First World War, when he was a butler and my Nan a maid in Hatfield, Hertfordshire, yes very Downton Abbey! My Dad was the second eldest of four boys. He was the cheekiest of the boys; my Mum always said Your Father may not have been the best looking one but he was the one with the nicest personality.

My Mum was an only child and lived in Essendon, sadly her father died in 1973, he had Reynaud’s Disease which is a condition that causes discolouration to your fingers and toes and other area’s of your body. I just about remember my Granddad; all I remember was him having funny fingers. He had strokes because his arteries were blocked and died of Arterial Sclerosis. Funnily enough my Mums current husband has Reynauds; she says jokingly that it must be following her. Her mother wasn’t a typical Nan to my brother and I, she loved her bingo and smoked, she always got the bus over to us on a Tuesday, every Tuesday without fail, until she died in 1989 after her battle with cancer.

My Mum and Dad met when she was 15 and my Dad 19, today the age gap would be talked about and would be a huge problem because my Mum was underage, but back then nobody batted an eye lid. They married four years later and lived in Hatfield. My Mum's cousin also married my Dads Brother so her cousin is also her sister-in-law and this would be bought up later in life because of my brother and me having the same condition.

I was born at the QEII hospital in Welwyn Garden City. My Dad went to the football that afternoon, which has always been a running joke, football was more important than his new baby daughter. Dad always said when I got married not to have it on a Saturday when his football team was playing at home, I got married on a Friday so no matches that day!

For months I was healthy, a very sickly baby, but I was perfectly normal. Mum said she would put me in a nice pretty dress and straight away I would throw up. But I didn’t seem as strong as normal infants, floppier, I couldn’t do things like sit up without help or start walking, Mum and Dad just thought I was a lazy baby. But as time went on they realised something wasn’t right with me, I wasn’t progressing like a normal baby.

After tests and a muscle biopsy they diagnosed a condition called Spinal Muscular Atrophy. SMA is a genetic neuromuscular condition causing weakness to the muscles. My Mum and Dad both had the same defected gene, if my Mum had conceived a baby with another man the baby would have been fine, unless the man also had the defected gene. The same goes for my Dad with another woman. Parents with the gene have a 1 in 4 chance of having a baby with SMA. I’ve found out recently that it’s also called ‘Floppy Baby Syndrome’. SMA affects about 1 in every 10,000 children.

There are different types of SMA and I had SMA II-III Intermediate which is in the middle. Type I (Werdnig-Hoffman disease) is the most severe. It may begin before birth or shortly afterwards (mothers may notice decreased movement of the foetus late in pregnancy), and affected babies are rarely able to lift their head or develop normal movement. Swallowing, feeding and breathing may be difficult and the child rarely survives to 2 years of age. Type II (Intermediate) usually appears within the first couple of years. The child may reach adulthood, although they may need help to sit or stand and strain on the muscles can cause complications. Type III (Kugelberg-Welander disease) is relatively mild and may be diagnosed as late as adolescence. Those affected may have problems walking or getting up from sitting.

The primary feature with SMA is the muscle weakness. SMA affects the nerves in an area of the spinal cord called the anterior horn. The nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and waste away. This can lead to problems with breathing as well as motor activities such as crawling, walking, feeding and head control.

There are still no cures for SMA but you can now be screened to see if you are a carrier. Once the abnormal gene has been identified, carriers can be detected by a blood test, and antenatal screening using CVS (Chorionic Villus Sampling) is available.

I was going to need constant physiotherapy and a lot of medical care, frequent visits to the hospital for check ups, calliper fittings, splints made, calliper shoes made and operations,

I could stand at an early age with my Mum assisting me and I could crawl but that was about it, I even remember trying to sit myself up. I would be on my side and I would put the back of my hand under my chin and push myself up, you just found a way of doing things. Everybody with a disability finds a way of doing things depending on their mobility. I’ve weakened over the years but I will do things like type, feed myself, and do my make up etc for as long as I’m physically able, although I am finding it more difficult.

Two years after I was born my brother Ben came into the world, born at home whilst I ate liver and bacon; the liver and bacon is all I remember about that day. There was a big chance that Ben would have SMA too. The doctors did tests on him at an early age because of me and yes he also had the condition. My Mum and Dad would have to bring up 2 children with a severe disability. There wasn’t the support back then like now, the odd social worker that really didn’t have a clue. One social worker even said to my Mum well at least you have two, they can keep each other company! much to my Mums disgust!

You see I had most of the tests before my brother came along, so he didn’t have to go through what I went through. I was first admitted to Westminster Children’s Hospital when I was just 19 months old for a Myelogram, a Lumber Puncture and various X Rays. All these tests were negative and nowhere nearer finding out what was wrong with me and the only thing I got from that particular hospital stay was Chicken Pox!

My Mum kept a record of my operations, physiotherapy etc and wow, reading back, I went through a lot. I was quite a healthy child and even as an adult I’m relatively healthy. I had tonsillitis a lot and ended up having my tonsils removed when I was 4. I just about remember this; I remember eating the ice cream after the operation because that was the only thing you were allowed to eat.

I had my Muscle Biopsy when I was 2, which consisted of taking a piece of muscle out of the bottom of my leg; the scar is still quite prominent now. They found out that the nerves in my spine were ‘paralysed’.

I had to go to the Q.E.II hospital in Welwyn Garden City twice a week for physiotherapy; we were living in Hatfield at the time so it was quite a lot of trips backwards and forwards.

In the June of 1972 I was fitted with my first set of callipers, how cute must those callipers have looked? I was only little. I was having new callipers until I stopped walking when I was 9. I’d outgrow them and so I would have to have a new set of callipers all the time.

Going in and out of hospital was normal for me, I used to hate it, but it had to be done and to be honest I didn’t know any different. I didn’t want to be pulled about and have physio but I knew it was to help me. My legs would be straightened, my knees pushed down, made to walk in my callipers and sometimes it was just too tiring for me. My legs and ankles would get hurt quite a lot if they were caught wrong or straightened too much. I mean, I had a green stick fracture of the femur when I was 3. There was another time when I sprained my ankles from being pushed through long grass at Whipsnade Zoo in one of those blue and white stripy double buggies, there was always some injury. When I was about 7 I was playing in my bedroom with the girls that lived upstairs. I was sat on the edge of my bed and one of them pulled me, not knowing my balance wasn’t good and I ended up on the floor with a sprained knee, at the time we thought it was broken. There was also another time when I tipped over in my wheelchair outside our flat and rushed to hospital with a suspected