A short Biography
My name is Steven Matthews and I have 48XXYY, an obvious statement as I am here today! However, it is relatively recently that
I found out that I had this strange affliction, and I have no apologies for calling this my affliction, as this is what it has been to me. I was born in November of 1981 and only found out I had this in 2012. I am married, have two gorgeous sons whom I adore, Aiden aged three and Alex aged one, and a lovely wife Jemma and we are on the road to discovering 48XXYY together along with my Mum and Dad, who also figure largely in our lives. There are elements of my story, which are my Mums to tell, and much, which is mine. Some of this is my Mums words, most are mine but typically with 48XXYY, I have needed the help of my Dad Alan to write some of this.
SO as they say, to start at the beginning. This is very much my Mums area as my early years are somewhat of a blur to me until I start nursery so over to my Mum Denise or Dee to all who know her.
Everything about Stevens’s delivery into this world was anything but normal. Firstly his Dad Alan had just became Blind and was adjusting to this along with me as I became pregnant with Steven. The first part of my pregnancy I had really chronic morning sickness, then the middle part of it was not too bad, towards the end however I developed Pre eclampsia; keytones and (sugar) in my water and very high blood pressure and this was the beginning of a very
difficult period for us all. Alan was away training with his first guide dog and I was staying with my Mum and traveling to hospital every day for tests to make sure that Steven was developing well and ready to come when he should of… not much chance of that! as he was already 2 weeks overdue, I was determined that Steven would not come until my husband got home but I started my labour pains on the weekend and he was not due home until the following Thursday. We all thought that Steven could not wait to get here so I went into hospital to have him as I thought. My labour was difficult to say the least and we found out later that the umbilical chord was around Stevens neck and this was stopping him deliver, a very stressful time for both baby and me as his heart rate kept dropping. He delivered an hour after his Dad got to my bedside and we had our lovely baby boy after a labour of nearly five days. Steve was born blue and had to have oxygen but after a couple of hours he was pink and lovely.
As we thought at this time, there was only one thing wrong with Steven and that was he could not suckle as his tongue is attached to the base of his teeth, something called short tongued and this meant he could not suck properly and he was not feeding. The first 6 weeks were horrendous, he cried constantly and we could not pacify him After many doctors appointments and many changes of milk, which he just kept bringing back up we were told to try him on Soya milk, this seemed to work as he seemed to be keeping it down, although every feed took about 2hrs, but after a few weeks he had lost too much weight. He very quickly went onto being fed soft solid food like egg yokes, milky porridge, baby rice etc and ultimately thrived. His development as a baby was quite good, although slightly slower than most, he sat up around 8 months, never crawled just shuffled along on his butt, he walked at about 15 months but his speech was difficult and I often acted as an interpreter for him as I could understand what he said whilst others could not. This would often get him very frustrated but we managed well enough and we put this down to his tongue restricting his speech. His main problem in his first few years was toilet training and to get him out of nappies, this was a task we thought we would never achieve. He was due to go to Nursery in September as he was nearly 4 and was still in trainer pants in the August, he often came home with his wet clothes in a plastic bag.
Nursery was really the beginning of noticeable problems for Steven. He was eventually, after a considerable amount of coaching and support in reading etc, designated as having educational difficulties. If we had known at the time we could have had better support through these years as Steven struggled right through his school years and I know these were not a particularly happy time for him.
This is when I really started thinking that Steve’s problems were because he had had the chord around his kneck and had been starved of oxygen, or could it have been the childhood injections, I think I was just looking for something to blame.
His early school years were difficult but he was in a small local school, which had time and support and was not too overcrowded and I would go in some days and support him with his reading, writing, colours etc, he stayed in this school most of his young life and was always in special needs classes, he had some good friends, he seemed quite happy at this time as I don’t think either he or his friends realized what special needs meant so he was never treat any differently or teased by anyone. The main problems began when he reached senior school and the dreadful strongest survives attitude that the schools had at this time. He struggled throughout his senior school years and this absolutely devastated his confidence and he was just another pupil having difficulties. It was a nightmare just getting him to school in the morning as he was so afraid of going he was always sick or had tummy upsets and needed
the toilet, anything so he didn’t have to go. It was heartbreaking making him go everyday knowing he was so unhappy. If he could only
have been statemented or designated at the time as special needs or a dreadful statement that was around at that time which was ESN, Educationally Sub Normal, we could have had help. We were told that Steven was just slow and there was nothing could be done other than give him remedial lessons. If only we had known then what we know now.
Before I hand you back to Steven, I want to say he was a constant source of happiness to me and to his Dad; we were proud of him whatever he did or achieved. We also were heartbroken on a daily basis by the way he was treated at school, he could never get the hang of money for instance and we used to have to put correct bus fares into separate pockets for him when he went out with friends. We would put his spending money into one pocket, bus fare to town in another fare back home in a third, the strain on him was enormous but he was determined to do what his friends did. You have to remember that at this time we had no diagnosis for Steven and we simply did all we could to make sure that he could cope.
Much of this was down to the support he had from group of good friends and from our larger extended family where cousins, grandparents and uncles and aunts let him run around and do everything that the others did. Family holidays were spent together and all of this aided us all, not just Steven. If anything, Steven was a withdrawn and quiet boy who mainly liked his own company, he would sit and stare at people and weigh up whether he could trust them or not before engaging with them. To a certain extent he can still do this at times. So we are at the point where Steven was leaving school, which was a relief knowing he wouldn’t have to go through that daily torment anymore however he now needed a job. So another part of his life began.
My earliest memories of school are of a constant struggle in class. I rarely understood what was being asked of me and can only liken it to knowing it should have made sense to me but that it never did. I spent the time either being taunted, bullied or just in despair. Had it not been for a couple of good friends whom I still see occasionally now, I doubt if I would have continued with school and simply would have ran off. Some teachers just did not notice me or
bother with me, these were the good ones, others, as in many schools, thought that making an example of me would show the others the error of their ways. The best of them ignored me, one or too tried to help but most of them simply do not and did not understand the pain of children who are not coping very well and see them as a nuisance in their classroom. My parents had moved to a new town just prior to me going into the senior school
and this added to my problems in as much as I did not know most of the pupils around me. I was the main one who wanted to move from where we lived to Sunderland, in my innocence, this brought me closer to my cousin who I got on with extremely well and she, Dawn was always kind to me and seemed to understand me. A very difficult and unhappy time for me were my school years and as I did not understand why I could not do what some of my classmates could the teachers had no hope of understanding nor did they seem to want to try.
I got through school years somehow and it was the happiest day I had, when I could walk away from the education system and I also managed somehow to get a couple of qualifications under my belt. My Mum and Dad were always there to support me and I used to ask my Dad to sit and talk to me when I was in the bath… not sure why then but I do remember we used to have a lot of chats then and I would ask things that I wanted to know. He would try and explain about people, girls, school and why it was so difficult. I
enjoyed those chats so much. My Mum was always there to help and advise and between them I think we got through most difficulties and many, many hours of homework. This usually ended up with my Dad writing some stuff generally, and then me reading it and putting it in my own words, something that has kept me going up to and including these few words. Besides my wife, they are the people who know me better than anyone else.
My first job was as a catering assistant in a care home. It was dreadful and I hated it so much that I thought the easiest thing to do was not go! I
would leave the house for work and get a bus into town. My Mum would sometimes collect me in the car so I had to make my way to where she would pick me up and I would be there as if I had been to work. I was bound to get found out and did! You can imagine my horror as I treated this the way I did school, if you don’t like it, clam up, say nothing to anyone and simply cope, my way of coping was simply to go somewhere else but not tell anyone. I am not sure how I would have explained my wages or anything to my parents, but as some of you will know, that is not how 48 XXYY thinks! My first real job was as a Chef with a catering firm we used to cater for parties by preparing finger food and what we called function food. People would chose from set menu’s, we would prepare this during the day and then go out on an evening and deliver it, set it up and serve it to people. I worked the worst hours in the world and was paid the lowest of rates for this but it made me speak with people and made me develop more confidence.
This job was going nowhere, but as my confidence speaking to people was up, I thought that I could work in a call centre and did this for a period of time. I was lucky that there were some good people there who supported me in what I did and we all got on relatively well. I had a supervisor who seemed to get the way I thought and helped me, as did some of the team I worked with. I
would not say I was great at this but it made me speak more to people and engage even more than I had done. Being at the other end of the telephone was better than facing them and the anonymity suited me well. I was growing up and girls were becoming more important. I had always got on well with some girls and found I could relate to them and often they confided in me where with other boys they were on their guard. I suppose that I was none threatening to them or something. I found out through trial and error what was appropriate to say and what was not and I made many, many mistakes with this. I could be too honest and open at times and found that many people are not ready for this. I had to work out that when someone, especially a girl said I look a mess, the wrong thing to say was yep you do, And what they were looking for was a compliment rather than the brutal truth. I was also too quick to show my feelings for people and was often hurt by this but eventually I learned and spoke with some of my friends about this and found out that how I was, was not how people normally were with each other. I could never understand the amount of dishonesty we have to have with each other but found out that what I thought of as dishonesty, was either sparing peoples feelings, or waiting to make sure that someone liked you also.
Around the year 1999 my Mum and Dad started their business and this was a changing point in our lives generally. My Dad it turns out was pretty good at what he did and very quickly, with my Mums constant support and guidance, the business grew and we ended up working together and employing nearly one hundred people at one point. For me this was superb, I worked with people who knew me very well and knew that if given time, I could pick things up as long as I had plenty of time to get a process set in my head. I eventually became the secure print manager for the business and I developed some friends that have been there for me through the whole time we have been together. Friends who have moved on to other companies but keep in touch and were there through the important late teenage years and early twenties. We had some excellent work nights out and I had a secure and supportive job to go back to. At this point I thought I would like to break out on my own and live by myself. I had shared a flat with a mate of mine for a short while and we both had a superb time doing this but when the lease came up the person wanted to sell it and we had to move out. That was a real happy time for me in that little flat. We had a bedroom each and took turns in the chores, great times. Anyway I wanted some independence and my Mum and Dad helped me find a house, which needed some work done to it. Now I am no D.I.Y. person so this fell to my Dad and my uncle who did the work and refurbished the house. I lived there alone and was quite happy but began to get a little lonely after the first year or so and really was about ready to settle down. Not that easy when you have a temper, speak out a little inappropriately and do not always have the confidence that you should. Thank God for the internet
I had girlfriends, some serious, others not so much but never seemed to find the one, the person who made my heart jump or that I wanted to spend the rest of my life with, or come to that who wanted to spend the rest of their lives with me. I met Jemma on an Internet dating site and we seemed to have a lot in common very quickly. Once we met and spoke with each other we understood that we had both had difficult lives in our early formative years. Jemma lost her Mum when she was very young and her Dad did not cope very well with having a young family of four all below the age of five. Jemma ended up being the Mum for them all and had also been in a few relationships that had gone nowhere. We actually got engaged on holiday in the Lake District with my Mum and Dad and the idea was that we would be there and get engaged later in the week on Jemma birthday. I was so nervous that I asked her on the first day there… I have no idea what we would have all done had she said no! Thankfully she did not. She knew I had a quick temper but also knew that it meant nothing and we developed a good little life together and we had our own home in Jarrow where I lived before I met Jemma. She worked as a care assistant in an old peoples home and has patience, although she can be as feisty as me at times. Jemma eventually came in to work in the family business and working together was fun although we did not work in the same section as each other, a little too close for us both I think. Jemma and I married on May 14th 2011, a wonderful day and within a couple of months Jemma and I decided we would
love to start a family. Little did we know what we had got ourselves into and how much in both good and bad ways this would change our lives.
Jemma and I were trying to get pregnant and it was obvious that this was not working, we did what everyone would do and ended up, eventually, at the doctors who were not overly concerned as they were our family doctors and knew of us both. They were quite calm in doing the normal checks. We were in for somewhat of a surprise! It ended up where they thought that my sperm count may be low and when I went for that check they also took blood as I have diabetes which was diagnosed quite late also, I was in my twenties when it was discovered. I was asked to go to a geneticist in Newcastle who told me that I had something that was rare, so rare that he himself had only seen one other case and this is where the early stages of diagnosis for 48XXYY began. My Dad came with me as it meant me having tests around my genitals and as a grown man I wanted someone with me as I knew if asked questions I would stumble and mumble and my Dad has no problems in speaking…. In fact the opposite! Thankfully my Dad was there as I was not only told I could not have children but If I could of, I should not have children by my own sperm as they would have been miscarried or been born with abnormalities and would not have survived. This is all that I heard as I was in total shock, at this point I thought that I was a perfectly normal functioning man and suddenly I had this abnormality. My Dad and I spoke on the way home and Dad had got the options from the specialist on what Jemma and I could do. We eventually opted to have a sperm donor and we chose one from a catalogue of people, (I know this sounds odd but this was the case I assure you), where we could chose from descriptions of the donors and we chose based on someone who looked as close to me as we could with dark hair, dark eyes, hobbies etc. We must have chosen well as most people say the boys look like me and Jemma! The wonders of modern science. Both Boys are from the same sperm donor and we got one batch with 3 viles of sperm. Unfortunately the 1st vile didn’t work and we were devastated, the 2nd vile worked and our son Aiden was born on October 22nd 2013, when Aiden was 2 we decided it was time to try again to make our family complete. We used the 3rd and final vile and our son Alex was born on May 4th 2016. I am so pleased that we did this as the boys are hard work, tiring, keep us up at nights and are the best thing that has ever happened to me, ever.
We researched 48XXYY and this is how we got in touch with the group, it explains so much from when I was little. My teeth were dreadful and my Mum often got the blame from the dentist for letting me have too much juice, too many sweets etc. Poor mum! My diabetes went undiagnosed for years to the point I was dreadfully ill and still have a huge struggle to keep this under control. I have leg ulcers which flare up every now and again if I am not careful, if I get a cold it goes straight to my chest and takes ages to clear up I have poor mussel tone so My Dad has to do heavy work for me, I fall asleep at the drop of a hat and cannot travel any distance alone on a bus because of this. I have to have testosterone injections to manage the hormone levels and Jemma knows when these are due. etc. etc. I want to remain healthy to see my children grow and to make sure I am there for them as my parents have been for me. I worry about how we will get through homework when they bring it home. I worry what we will
do when My Mum and Dad are not there, I worry about why I cannot pass my driving basic theory test when I am a really good driver, so much so my instructor will not take any more money from me as he cannot teach me anything else. I worry what the boys will think about me when
they know what 48XXYY
means. Life is a worry as it is for most people with some added issues. My life to me is normal as it is my normal. I find some things dreadfully
difficult and am still learning to admit that I have a disability, especially as I spent thirty years not having a disability. I have been told my story is inspirational; I have no idea why, as it is simply what I have done. I want to help people and lift their expectations but I am no example. I can only say that you should live your life despite what anyone tells you that you can, or cannot do. You should be proud of your children, as first and foremost they are children who happen to have some more chromosomes than others. Let them be all that they can and help them to do this. Most of all aid them to be happy whatever this takes. Things will be difficult at times, even seeming to be hopeless, take one day at a time hopefully things change and people will become more accepting. Life is for living to the full.
Alan (Stevens Dad):
I thought that I might have a couple of lines if you will indulge me? If I was half the man Steven is I would be extremely happy. He is the best Father I have ever met and I wish I had been as good. He is the person and the achievement I am most proud of in my life and as a man, he is a joy to know and an example to me every day as how good someone can be As Steven so rightly says; Life is for living to the full, make sure that you live it.