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07966 589509

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Karen Johnson, Chaiman, 07966 589509 - 01706 632291 karen.gem@btinternet.com

Garry Whitworth, Treasurer, 07972 381 887 or 01706 523257, garry.whitworth@ntlworld.com

MATTHEW'S STORY

It has now been 2 and a half years since we started the Intratheacal Elaprase drugs trial in Birmingham and time passes quickly. We seem to measure time by appointment. That is which appointment, check up or operation is this month. If we had even known 9 months ago what Matt was about to go through we would have run a mile or buried our heads in the sand. But that is not possible, we are a Hunters family and we tackle things as they occur and not let anything slip by. 

Matt has been an absolute gem over the passed months, enduring his IV port being replaced, his IT port failing, being replaced then failing again and having to wait for a new IT port from American, having that inserted in his side and lastly having a gastro tube placed in his stomach to help with his feeding at school. 

He took it all in his stride and has usual surprising us all with his character, quick recovery and constant smiles. Although, medically we have been through the mill with Matt, as a family life goes on. We gained a new member of the family in September a border collie pup called Tilly, or as we call her Silly Tilly. Matthew turned 11 in January, his sister is enjoying being a teenager, we are still renovating the house and Matt is getting ready to transfer to "big" school in September. 

Life goes on, Matt is healthy, still very active, mobile and for the first time his teachers told us at parents evening that Matthew's abilities have not decreased but levelled out and in some cases improved. Magic words to hear, something must be working and long may it continue!

It has now been 2 and a half years since we started the Intratheacal Elaprase drugs trial in Birmingham and time passes quickly. We seem to measure time by appointment. That is which appointment, check up or operation is this month. If we had even known 9 months ago what Matt was about to go through we would have run a mile or buried our heads in the sand. But that is not possible, we are a Hunters family and we tackle things as they occur and not let anything slip by. 

Matt has been an absolute gem over the passed months, enduring his IV port being replaced, his IT port failing, being replaced then failing again and having to wait for a new IT port from American, having that inserted in his side and lastly having a gastro tube placed in his stomach to help with his feeding at school. 

He took it all in his stride and has usual surprising us all with his character, quick recovery and constant smiles. Although, medically we have been through the mill with Matt, as a family life goes on. We gained a new member of the family in September a border collie pup called Tilly, or as we call her Silly Tilly. Matthew turned 11 in January, his sister is enjoying being a teenager, we are still renovating the house and Matt is getting ready to transfer to "big" school in September. 

Life goes on, Matt is healthy, still very active, mobile and for the first time his teachers told us at parents evening that Matthew's abilities have not decreased but levelled out and in some cases improved. Magic words to hear, something must be working and long may it continue!