We have just come back from a week in Portugal, we all had a fantastic time and Matthew surprised us all.  We had no problems getting him on the plane, last year he kicked and screamed.  He walked and walked and walked and went paddling in the sea.  He was well behaved 90% of the time, slept better, went on a Log Flume ride and even plucked up the courage to push most of our holiday party in the swimming pool, especially his Dad.  You should have seen the little Indian dance that he did afterwards.

We are coming up the our yearly review and we hope that he continues to have no reaction and that his GAG Levels continue to drop.  Everything is kept crossed.

Matthew is now 7 years old, with a very big personality and cheeky grin.

He never stops smiling, giggling and never sits still. He is always on the move and he is so curious about the world around him. His famous questions at the moment are “what are you doing?” and “where have you been?” our poor neighbours have no privacy what so ever. 

Matthew was finally statemented last year, which meant that we could transfer him from a main stream school to a special needs school, where they would teach him the all important life skills as well as the general school curriculum. We said an emotional goodbye to his old school at Christmas, with a week of parties and events. He loved them all and he received so many gifts from his friends and staff, we were quite overwhelmed. He started the January term at Pendle View Primary School and settled in so well, it was like he had been there for years. He continues to learn and surprises us daily with the comments he makes about general life. 

His health is still very good although he now wears double hearing aids. His gag levels have now dropped from 57 to 14.1 and still no reactions to the drug. He now has his treatment at home, which is a god send. We no longer have to make the weekly visit to the hospital. A wonderful home care nurse called Joanne comes to us. Matthew is now very relaxed and just gets on with it. 

We had a busy year with holidays, family events and school outings. Matthew was there for them all. We had a wonderful holiday in Spain in the summer and since then Matthew's confidence in the water has grown and grown. No problems with the plane and he even has got used to seeing people dressed up in costumes, such as Father Christmas. As Matthew gets older his understanding of the world is increasing so he is becoming less frightened. 

He now rides a two wheeled bike, a go kart and his friend’s trike. When he is out and about outside our house you have to watch your ankles. Sometimes I think it is us that needs to wear the helmet and knee pads and not Matthew. He takes no prisoners.

We have our yearly review coming up in June and we hope that he continues to improve and surprise us with his zest for life.

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.