About Matthew
Matthew was born in 2008. As I mentioned in Daniel's story, this is where we found out about the 9q34.3 deletion. Because technology had advanced over the years, we were able to look more closely at the chromosomes and the deletion was detected.
We started contacting a number of families. At this point there was only a very small number of people who had this diagnosis, and it became clear that we were dealing with a very complex and rare chromosome disorder. We were in regular contact with an organisation called Rare Chromo.org.
As the years went on more and more people all over the world started getting diagnoses and a Dr in the Netherlands, and the USA were already underway in testing and trying to find out more about the deletion and how it affected the person who had the deletion. It was eventually named "Kleefstra Syndrome '' after the Dr doing a lot of the research. Here is a link to the Kleefstra Syndrome Webpage: Kleefstrasyndrome.org
Matthew started walking at around the age of 3 years old, and had a significant developmental delay. Matthew was flopping from the neck to the waist and was displaying the opposite to Daniel. Matthew started to display quite a significant delay, and we were advised that he was a lot worse than Daniel. I remember having this information and breaking down in tears. However determined that Matthew would have a good quality of life. I was currently working for the RAC in their call centre. I had to take some time off because the news had really affected me. We did go away that year in December just to get away from everything and had a good break.
In the new year I learned that I was being made redundant from my job, so I decided to take on the caring role for Matthew which I did until 2012. I helped my wife out with both boys because it was challenging for one. Matthew would become very unsettled at nights, and instead of being firm with him, mum decided to bring Matthew into the bed just to get a good night's sleep, however as i mentioned this turned out to be disastrous because he took over the bed, i ended up getting a single bed, and mum was having a restless night. I was closer to Matthew than Daniel and did more things with Matthew.
When we went on holidays, I would be the one to take him back to the room to allow mum and Daniel to stay up to the evening entertainment.
In School Matthew showed significant Challenging behaviours, where he would literally trash the classroom. However at this age he was smaller and easier to contain. A number of strategies were put in place in school. Eventually Matthew was just not coping in a classroom setting, and was having to have a table placed outside the classroom. The school eventually put Matthew into a specialist class with a smaller number of children and a higher ratio of staff. When Matthew was in a good place he would get on well and worked hard. However over the years Matthew has really struggled in school.
Where Daniel was settled in School and Challenging at home, Matthew was actually the opposite to Daniel. In 2012 i took on a little Job working from home, and this is where i explain in my other page, my journey of being a single parent.