Rhydian my son was born 3 weeks early by emergency C-section due to me having pre-eclampsia. He weighed 7-and-a-half lbs (3390 g) and his head circumference was 36 cm. He spent the first week in an incubator due to jaundice.

Problems became apparent when all milestones were delayed. He was a ‘floppy’ baby, late sitting up, standing, walking, and he had very few words at age 4. During one check up he tested as hearing impaired, he was quite deaf, so had an operation to have grommets inserted in his ears. At that time, they thought this might explain his delay. He was a jolly and happy baby but I dreaded every visit to the health visitor for his check ups almost from the start. I remember the check list questions—was he looking at me when I was talking, did his head turn to me, was he reaching out to grab things, could he pick something up, was he trying to sit up…endless questions and my answers were usually always no, no, no. I worked myself up when going to the next one hoping things would be better, but they rarely were.

He started infant school, but it was obvious he needed extra help. My neighbour worked for the education authority and said he needed a Statement of Educational Needs. I had no idea what that was. With her help and after a lot of form filling and assessments we got him into a speech and language unit in a Welsh school 20 miles away. At 4 years old he would go in a taxi to school with an escort accompanying him. I felt like such a failure as a mother. In his new unit there were 8 children, a specialist teacher, and 2 or 3 helpers. They pushed him hard but he thrived there. He had words to learn every week and a spelling test every Friday. It was hard work at the time I remember, but I thank my lucky stars every day that he went to that specialist unit.

Growing up Rhydian had balance and co-ordination problems, fine and gross motor issues, dyspraxia, dystonia, hypotonia (low muscle tone), joint hyper-laxity, gross/fine motor skills and receptive and expressive language issues, social skills difficulties, and lack of awareness of danger. Things like remembering, putting words in the right order, sequencing, and concentrating were huge issues for him. He suffered with global developmental delay, obsessive and ritualistic behaviour, and he stuttered badly when speaking. We had challenging behaviour issues too. As an older child he’d often have a tantrum and I’d get so embarrassed when out and about as he was this big strapping boy acting like a small child. The looks and murmurs or nasty comments or laughter was heartbreaking. As an older teenager he was diagnosed with ADD, and a mental age of a 7-year-old.

Not having a name to explain his condition was terrible. When I spoke to my GP and explained what he was like and kept asking for help, saying there must be something somebody could do, they were hopeless. No one could tell me why he was so slow and different compared to other children. I longed for the day that I could put a name for his condition on a form, that I wouldn’t have to write pages of examples of what he was like when I was meeting someone new and explaining why I needed help.

I had to fight for everything and often made my own referral. He ended up having speech therapy, physio, occupational therapy, rebound therapy (jumping and exercising on a trampoline), and music therapy.

We ended up with a wonderful paediatrician who arranged genetic testing. They tested him for everything they could as far as the science allowed back then. I’d have a phone call every few months to say they’d discovered something new and wanted more samples to test us all again, but it would always come back negative. They told me he was ‘unique’ and would probably never get a diagnosis. I know that Rhydian’s samples were one of the first sent to a researcher in London, Dr Rahman. I have a letter from May 2002 saying she was looking into increased growth in children and very interested in him as he “did not resemble any of the recognisable patterns we see with overgrowth syndromes. Therefore his situation is somewhat unique.” I consented to the study and we ended up sending numerous samples to be tested over the next 12 years. When I spoke to Dr Tatton-Brown in 2017 I asked if she was aware of Rhydian all those years ago and she said yes, she’d been very aware of him, working on his various samples for years. I asked why he wasn’t in the first batch of results and she said it was because they hadn’t had a consent form back from the hospital! His TBRS patient number is the the lowest, however, a fact I’m strangely proud of.

When the time came for Rhydian to go to Secondary school, there was nowhere locally he could go. They offered to send us to another out of county school, or a special school for children with profound disabilities (which was out of the question to us as he learned by copying behaviour), or an English language school. At this time, he mostly spoke Welsh with poor English, and had no friends locally. My point was if he was going to grow up and live in Llanelli, he had to go to school there to know the people and surroundings, and if our first language was Welsh, he should continue to be taught in Welsh, not start over again in a different language. I had a meeting with the Director of Education and took 3 local MP’s (Members of Parliament) with me along with a very supportive parent who was in a similar situation to us. We battled for 3 years almost to get provision for him in our local school. Those were without doubt the hardest and worst 3 years of my life. It almost broke us as a family.

I’m not brilliant at remembering exact details and timescales, but I’ll never forget the years of worry, anxiety, anger, helplessness, hopelessness, and guilt I felt that somehow it was my fault he had all these difficulties. Eventually, on one momentous day, I got a letter to say it had all been approved and they would provide everything we had asked for! Another family had recently taken the Education dept. to court and won, so I think that helped our case. He had his own one-to-one teacher in our local school and a detailed personalised curriculum with weekly swimming and trips out to the community to learn life skills included in the Statement. The school turned a sixth form common room into a classroom for him and he enjoyed every single day he was there until he left at 19. He would stay in mainstream for registration, physical education, cooking, woodwork, etc., then withdraw into his own classroom for most other lessons. It was a wonderful setup. All his skills improved during his time there. He even sat exams and passed quite a few that were based on life skills through coursework.

As the years went on, more children with additional needs shared the classroom but they had their own support. The teacher was officially Rhydian’s own until the day he left school. The headmaster thanked me when Rhydian left for sending him to the school, not just for Rhydian’s own sake, but for all the other children who got to benefit from him being there, that befriended him and would turn out to be better people for knowing him. Setting up that facility for him and never