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Tony’s Life So Far |
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I was born on 26th June 1982 at Margate Hospital, weighing in at a healthy 10lb. Initially, there were no problems. However, within a few hours of my birth, I was rushed into Intensive Care with breathing difficulties and suffering from fits. The prognosis was not good and I was taken to the Kent & Canterbury Hospital for further treatment. Basically, the doctors thought that the brain damage had taken place meant that I could not live for very long and I was baptised. Obviously they were wrong, because I am still here, over 20 years later.
Anyway, 6 weeks later I was discharged and spent the next few weeks living with my natural mother and a variety of carers, until aged 3 months, I was taken into care for an initial period of 2 weeks.
Although it is hard to believe, this was the best thing that could have happened to me. At the end of September, I was placed with the Cook family, who were to foster me for the 2-week period. I am told that the 2 weeks dragged by very slowly, as this skinny infant did nothing but scream and cry. Sleep was almost non-existent. Feeding me was virtually impossible as I found it very hard to swallow. At the end of the 2 weeks, my natural mother realised that she was not able to give me the care and attention that I needed and gave me up for adoption. The Cooks agreed to keep me on for a little longer.
I think that I must have realised that these people really cared about me as, slowly, I settled down. When I was 6 months old, I was, at last, diagnosed as having Cerebral Palsy. The medical profession said that I would never develop mentally beyond an average 4-month-old child and that I had very little chance of reaching adulthood. Despite all of this, my new family must have liked me because, when I was about 18 months old, they formally adopted me. For them, this marked the start of a long fight for me to be given the chance of showing what I could do.
Despite my family’s protestations to the contrary, it was not until I was 3 years old that anybody from the medical profession was prepared to admit that my problems were all physical and that, mentally, I was perfectly normal. It was just that I had no speech and, consequently, could not tell anybody what I was thinking. Thankfully, a far-sighted speech therapist was able to look beyond my physical disabilities and see what lay beyond.
Unlike all other children, at the age of 3 I went to my first school. In my case it was the Foreland School, which is a school for children with severe mental and physical disabilities. Here I stayed for 2 years, although it soon became apparent that the school, although it tried very hard, was not suitable for a child with my strange mix of physical disability and yet mental normality. My parents were convinced that I could cope quite comfortably with the intellectual demands of a ‘normal’ school and so began the battle to have me accepted into mainstream schooling. The experts were adamant that it could not be done. My parents were as determined that it could. Through SCOPE, my parents arranged for a private assessment that confirmed that I could cope mentally with the demands of a mainstream school.
Slowly, we were winning the battle. Then disaster struck when John, my father, died very suddenly and unexpectedly. I leave you to gauge the impact on a 7-year-old child confined to a wheelchair and unable to articulate his feelings. Anyway, Sue, my mother, continued to battle for my right to a normal education and, eventually, when I was 8, I was given a place at Newington Junior School. It was now up to me to prove that my mother was right to keep fighting. I hope I achieved this as, when I was 11, I transferred to secondary education at The Ramsgate School. Here I stayed for the next 6 years. My time there was not without its ups and downs. After approximately 1 year, I was struck down with a severe attack of ‘fits’. The upshot was that I spent the next year in a variety of hospitals, both local and in London while the doctors tried to find out what was wrong with me and how best to treat it.
Needless to say, I made a full recovery. Well, almost a full recovery. The problem was that for about 6 weeks after coming out of hospital, I suffered a form of amnesia with the result that I had no idea who I was. Magically, on Christmas Eve, I suffered one more huge fit and, when I recovered, my memory had returned. My mum says that I was a much nicer person during that 6-week bout of amnesia! But what does she know!
In 1995, it looked as if things were finally starting to look up. We all moved into our present house, that is mum, Daniel, my brother, and me. A little later, my mum met Bill and they are now happily married. I gained two new stepbrothers, Chris & Tom. Everything looked rosy. I should have known better. In June of 1996, I suffered possibly the bitterest blow of all when Daniel, my beloved older brother, suddenly died. I was bereft. Daniel was not just my brother; someone I knew very well. I was desperate to think of a way of doing something in his memory.
Eventually it came to me. I would collect odd earrings and sell them for charity. The fund was called ‘One Million Earrings for Daniel’. I don’t know why, but the idea took off. Take-a-Break magazine got hold of the story and soon we were getting a sack full of mail from all over the world every day. Of course, it was up to Bill & Sue to sort them all since I could not help. They did the donkeywork and I provided the genius! Eventually, I appeared on Meridian Television. I decided to give all of the money raised to ‘Children In Need’ and was flattered when I was invited to appear on the annual ‘Children in Need’ show when I handed over a cheque for almost £6000. I hope that Daniel would have approved.
I
took and passed my GCSE examinations and passed 2 full time courses at
Thanet College. I am taking a break from college, especially after being
seriously ill. With the help of a great many kind people, such as the local
newspapers, businesses and the public, I have a new all singing, all dancing
model laptop. The laptop is not completely portable yet, because I have to
buy a monitor to fit on the front of my wheelchair, which I am in the
process of doing so.
I am
also thinking how lucky that I am to be still alive after being seriously
ill last year.
By the next day, which was Friday 13th I had developed a rash on my tummy. Over the weekend, the rash got very raw, and I started sweating and shaking. My mum looked in the medical book, and it said that the anti-depressants could cause a rash, sweating and shaking.
On Monday morning the 16th, I went to my GP again to find out what is happening to me. He said that the rash was shingles, and sent me away with some cream and a bottle of pills. My mum asked him that was the anti-depressants making me sweat and shake like mad, and he said no. On Monday afternoon, I felt the back of my tongue was on fire. Also, after 12 years I finally came out and told my mum that I was gay, which was a big weight off my shoulders. I was very worried how she would accept it, but she accepts it very well.
On Tuesday, I felt that whole of my tongue was on fire and I could not eat anything. When my mum looked in my mouth, she noticed that I had the same rash on my tongue that was on my tummy. The sweating and the shaking were getting worse.
On Wednesday morning, my mum phoned the doctors’ surgery to get my GP to come out, because I was too ill to go to the surgery. My GP phoned my mum and said that there is nothing wrong with me, and I was making it up. He said that she should be tougher on me and I will eat when I feel like eating. Also, he said that, you couldn’t get shingles in the mouth. Lucky, my mum took no noticed of the GP, because she could see that I was very ill. On that Wednesday, I kept drinking, because my tongue was so dry. The sweating and the shaking were still getting worse.
On Thursday 19th, WHAT A DAY! My mum phoned the surgery to see a different doctor. The appointment was at midday so, my mum put me in my wheelchair and we walked down to the surgery, which was about 20 minutes walk. It was a cold and wet day, and I was really ill. I saw a woman doctor and she was rubbish as well. After she looked at me, she said that I was seriously ill and I had shingles in my mouth. My mum asked her that was the anti-depressants making me sweat and shake like mad, and she said no. She said that to go home and phone 999 for an ambulance. We did go home and phoned for an ambulance. On the way out of the surgery, a member of staff said to us that don’t worry, I was the third patient of the day that she had told to go home and phoned 999 for an ambulance.
When the ambulance came, the paramedics said that they have already taken 2 people to hospital that were told to go home and phone 999 for an ambulance, which is the wrong thing to do. If the patient is that ill, then the woman doctor should have phoned for an ambulance from the surgery.
When we arrived at A&E, they put me in a room without windows. I had to wait on this awful trolley. The trolley had sides with sharp edges, which I kept hurting myself on. My mum asked for padding on sides, but she was ignored. After 2 hours, a doctor finally saw me, but she was rubbish. She looked like that she had just came out of school. She confirmed that I did not have shingles. She did not know what wrong with me, and she said that it was the GPs job and theirs. She gave me some medicine and sent me home. The nurses had arranged for me to go home in a patient ambulance, which took very long time to come. When the ambulance did finally come, the paramedics were unhappy to use their Stretcher so, they wanted to go to my house and fetch my wheelchair. For them to do that it would mean my mum had to go with them to let them in, and so they did. On the way out of the A&E department, my mum asked the nurses to keep an eye on me while she could fetch my wheelchair. They said no, it was not their job.
HELLO! I thought the nurses were there to nurse.
On Friday 20th, my mum went to Boots to ask them that if it was the anti-depressants making me ill. They looked up the drug and I had every side effects. They said that take me off them, and so, my mum did. Over that weekend, I stop the sweating and the shaking, but the rash on my tongue was getting worse. The rash on my tummy stays the same. I felt ill and weak.
On Monday 23rd, my mum phoned the doctors’ surgery for another call out, because my tongue was still the same. Also, I have not eaten for a week. A different doctor came called Dr. Onno Peters. He was shock about how ill I was. He could see the medicine from the hospital was not working so; he gave me a different medicine. He was surprise that I have not seen by a specialise since I have left school, which was 6 years ago. He could see I was very underweight. He said that he would come back next Tuesday to see how I got on with the medicine.
On Tuesday 24th, I started to have mouth ulcers. I still felt ill and very weak. My mum was very worried about me. I had developed sores where I was laying and sitting, because I was loosing weight very quickly.
On Wednesday 25th, some people that I know have come to see me. Each one of them as they walked through my bedroom’s door, looked shock. I thought to myself “thanks for reminding me how ill I am”. By the Wednesday, my mouth was full of ulcers. The worse ulcers were on my bottom lip. My bottom lip was very swollen, and if I looked down, I could actually see it. I had big ulcers on my tongue, which stopped me from putting it out.
On Thursday 26th, some more people visited me and told me how ill that I was looking. My mum called Dr. Peters out who referred me to a ward in hospital. He said to my mum that he wants everybody to have a look at me while I am in hospital, and make sure that they don’t let me out without a proper check-up. I went to hospital in an ambulance as a blue light. (That was well cool!)
So! Exactly a week later, I was back in hospital again. It meant that the school doctor that I saw in the A&E the week before failed to do her job properly.
I stayed in hospital for 2 weeks and 3 days. Where they did blood tests and I was seen by some specialises. They didn’t know what was wrong with me so, they put a nasal tube in me and put me on a waiting list to have a gastric tube directly into my stomach. They did that in the second week. I was in a lot of pain after the operation.
A gastric tube is a feeding tube that goes directly into my stomach above my belly. It does not go down my throat.
The days in hospital seem to go past slowly, but I had lost track of the time so, I will not bore you by telling you everything what happened in hospital. I was discharge from hospital on Sunday 13/10/2002. While I was in hospital, my weight fell down to 6 stone. Before I was ill I was probably 9 stone, and I am about 6 foot tall.
For days after I felt very sore and weak. I went to bed in the afternoons. I was very depressed and I hated the new diet. In the daytime for 3 hours, I have a bag of feed going through the tube and 3 special drinks per day. The feed is made of all the good things that probably my body never had before. The doctors in hospital had done nothing for my mouth so, it was still very sore. I still had the great big ulcers.
I was going to have the gastric tube in some stage of my life anyway, because the doctors have found out that when I eat, the food sometime go down the wrong way.
Weeks have gone by, and every week I was determined to go back to college. I did not go back to college until the new year (after Christmas). When I did go back, I had a lot of time off being ill. In March, they decided I was too ill to carry on and I can start she course in September 2003.
As for the future, who knows, although I do have a few ideas. So, if anybody wants the help of a normal but sexy 20-year-old, I am your man.
I should point out that you might have to make allowances for my physical disabilities, since I am confined to a wheelchair and have only partial use of my left hand. Apart from that, I have a normal mind. I have no voice, so all of my communicating is done by using my special adapted laptop.
Last updated: 31/05/03 |