It is the 14th February, Valentines Day and we are in the least romantic place you cant think of, but to us, at the moment it is the most important, our second hom, the genetics unit at The Royal Birmingham Children's Hospital. We are here with Matthew having his fourth Intrathecal Elaprase Infusion, via a second port-a-cath which is positioned under his ribs then into his spinal column.
Matthew is one of five boys outside AMerica to have qualified for this drugs trial which is based in America. The purpose of the trial is to try and get their missing enzyme into the brain, across the blood-brain barrier and to slow down the mental deterioration of the disease. The orginal trial is six months long, then the boys will enter an extended trial for two years, this we are hoping will have us based back in Manchester.
Matthew is tolerating the weeks in Birmingahm well, which is once a month. He is having mixed results. Matthew is saying words we have not heard for a while like broccoli, light and, the most moving, Mummy! He is putting more words into sentences and trying very hard to pronounce longer words. On the downside, he is struggling with behavioural outbursts, which mean if you are not on your toes you get a cudd around the ear, or a smack on the arm. There is no reasoning to these outbursts, we are just hoping they are a phase that he is going through.
In gereneral, he remains the happy, healthy ittle boy we all love, who gets his emtions a bt confused at times.
We are looking forward to a long, hot summer with plenty of family time spent outside in the garden with family and friends.