24, United Kingdom
Abdul was born in Bangladesh in 1984 and we came to the UK in 1988. Everything was going fine. We have lived and continue to live in the East End of London. He went to the same secondary school where my youngest brother now goes as well as the local six form college (then it did not have a separate six form as all students mixed).
He had a couple of unexplained seizures in about 2002 or so and eventually he became an inpatient at the Royal London Hospital. He also lost his place at the college as the staff felt he could not come back that year as he had missed too much work but he was guaranteed a place the next year which he could not take. I would just like to point that we are not in anyway critical of the college as they have been wonderful and understanding.
The doctors at the hospital put him on anti epileptic medication. The seizures got worse and worse and we realised that he was developing other problems like he could not hold a pen properly.
Eventually after a number of tests and a minor operation they diagnosed Lafora. By that time eventually the things were getting so serious that he was on life support and they gave him six months before death.
We asked that he come home to spend his final days here.. Those days have become years. He has regained some of his abilities for example sometimes he can stand up without falling or that he can talk about things sometime as well as do things like watch TV. He is a fussy eater.
He even at his best moments is like a child who cannot do anything on his own but there are times when he is more lucid then other times.
We have had wonderful support from the hospital but it takes time for the local authority or our landlord take make adjustments to the house and they are only making them now.
It takes the life out of people who suffer from it at the peak of their life.
– Submitted by Ali’s Brother