Alexander's Story - who underwent hemispherectomy

My name is Lynn Buchanan and my son Alexander is 24 on April 21st    Alex has three sisters, his twin Chloe and two older sisters, Laura and Faye.  Some of you may remember me as being one of the original committee members when Contact a Family helped us form the Sturge Weber Foundation UK
Alex was born in 1987, pre-internet days so we had no way of finding information.  Of course, initially, we had nothing to find information on, we thought everything was fine and Alex just had a birthmark. Alex is a twin and we had to take him and his twin sister, Chloe, back to the special baby care clinic because, we were told, they were two weeks early and small.  The staff showed a lot more interest in Alex than they did Chloe and I always thought this was strange.  They saw so many babies every week, why were they fussing over Alex so much?
At four months old Alex had his first recognisable seizure.  We took him to Alder Hey A&E and he was admitted.  He was given a lumbar puncture and we were asked so many questions.  He was eventually given a CT scan too but we were never told the results.  I was young and naive and assumed that, if there was something to see that they would tell us.  How wrong could I have been?  Alex was discharged after being in hospital for a week and we were given a bottle of phenobarbitone   and a clinic appointment.  We were not given a diagnosis or a prognosis, we left thinking Alex had epilepsy, which was traumatic enough. 
When Alex was 10 months old he had a vomiting bug and couldn’t keep his meds down so he was admitted to Alder Hey again.  It was there that we noticed his right arm was floppy and he wasn’t using it.  I was surprised when the hospital listened to me and arranged for a physiotherapist to see him at home.  The physiotherapist Alison duly arrived and during her visit mentioned Sturge Weber Syndrome.  We looked puzzled and Alison looked horrified.  “Don’t you know?”  We told her we didn’t and she said that she received a note with “query Sturge Weber Syndrome” That is how we discovered that Alex had Sturge Weber Syndrome.  Through trying to find information on the syndrome I came across Contact a Family and that is how I became involved in setting up the support group.
By age four Alex’s seizures were affecting his quality of life and his right side grew weaker.  It was at that stage that hemispherectomy was mentioned.   Alex was only the second child that I had heard of to have this surgery and it was a very difficult decision for us.  It was made slightly easier though when we were shown his first and latest CT   scans and by the confidence we had in his neurosurgeon.  After surgery Alex was paralysed on his right side and couldn’t even lift his head.  With the help of great physiotherapists he eventually walked again but cannot use his right hand.  He also has hemianopia which we did not really understand fully until he left school and started a computer course. We always knew how it affected him on his right side; his lack of visual field was obvious. The inside of the left eye, however was not so obvious until I began helping him with his computer work. He tends to miss the beginning of words and clicks slightly in the wrong place with his mouse.  He was registered partially sighted while at college so that he could get some support

After Alex’s surgery he went to a school for children with physical disabilities as he needed regular physiotherapy.  While at school he developed an interest in athletics and began attending a disability sports club once a week. I became involved when the club split from the social side and we formed our own charity.  I was fundraiser and then secretary for 7 years.  During his time at the club Alex regularly competed nationally and once, internationally.  He was selected to compete at the CP Sport World Championships in Connecticut USA.  He had a great time away from us for two weeks and the experience was great for his confidence.  Athletics  was a fantastic way for Alex to improve his strength and stamina, especially as he didn’t get any physiotherapy once he left school  Travelling to competitions across the country was a great way to meet new people and be inspired by athletes whose disability was much worse than his own.  Alex has met Princess Margaret and John Major and was a mascot for Jan Molby’s testimonial at Anfield where he ‘scored’ a goal against David James and received an enormous cheer from the Kop.
Alex has many sports coaching qualifications and a gym instructor qualification and is currently trying to get a higher level of English.  Maths is something he finds very difficult and has tried a number of courses with no success – yet!  He is currently on a Business Administration course alongside his English and does voluntary work at Everton Football Club.  He loves football and can remember games from seasons past with no difficulty – in fact, we call him Statto.  He would not forgive me if I did not mention that he is a season ticket holder and passionate fan of Tranmere Rovers.  He travels the country to away games with his dad, Colin and it’s a great way to vent his frustrations, and there are a great many frustrations with his team!  Alex is a sensitive, thoughtful and caring young man and we are very proud of him indeed.