Testimonies

We are the Russell family, Mum Sue, Dad Phil, eldest son James (now 31), daughter Tamsin (now 28) and youngest son Andrew (now 23).

Back in the summer of 1994 both Andrew and Tamsin had E coli 0157 which developed into HUS for both of them. We never found out where they got it from but as Andrew became ill first we can only assume that Tam caught it from him. Tam gets quite annoyed with us because we always say that she wasnt very ill, she only got kidney failure but compared to Andrew she actually wasnt nearly as seriously ill. Andy had severe neurological involvement, developed a heart murmur, was unconscious for a week and during that time we didnt know whether he would live or die. He eventually came round but suffered a bleed in his cerebellum which affected his fine motor movement and also his balance. He was in a wheelchair for 6 months whilst he learned to walk again and has never managed to recover his ability to write which was a severe blow to everyone as previously he showed an excellent aptitude for art. However, he has had to use a laptop since his illness and it has not proved a problem. Tam was discharged from hospital after a month and has had no ill effects.

Our reason for writing this is that having read the lead article in the June newsletter we thought we would tell you about our experience with Andrew. When he was discharged from hospital after 5 weeks and having suddenly become a special needs child, we were told that his recovery could take up to 2 years and no-one even knew how well he would recover. He in fact maintained a continuing improvement for the next 7 years until he reached a plateau. He is a natural fighter and has never let his physical problems get in the way. He learned to ride his bike again by the time he was 12 and using a computer became an integral part of his life. He still has problems with his balance, still cannot write and suffers from chronic fatigue but he passed his driving test first time, went to art college and then on to university and last year graduated with a BA 1st class with honours. He now runs his own business in partnership with a friend from university developing web games.

Every year since his illness he has had to have a blood test and urine test and his urine has always contained blood and protein but last year, for the first time, his urine was clear.

We are very proud of Tam and Andy. Tam is engaged and getting married in August 2009 and Andy has a lovely girlfriend who looks as though she is here to stay, so our advice is NEVER GIVE UP our experience has shown that no matter what the medical profession says, they dont always know the answers and things might not be as bad as you think.