Matthews Battle with MPS2
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Our son Matthew was diagnosed with MPS2 (Hunters syndrome) in 2015 at the age of 13 months. To date, there is no cure. We are setting up this go fund me page to raise awareness and funds for matthews hospital expences and to help find a cure for our little hero.
Matthew is a typical 3 year old. He is a happy little guy who likes to get up to mischief with his older brother. He loves peppa pig, teddy bears, singing and dancing. He is always laughing, despite all thats been thrown at him.
MPS2 is a rare metabolic condition where the body is missing a vital enzyme (iduronate-2-sulfatase) which clears the body of sugars and toxins, without this enzyme, the sugars and toxins are building up in his body.
With this the joints in the body get stiff and sore, and over time his movement will become restricted and in the future will need a wheelchair.
Other problems that develop over time are heart problems, breathing problems, hearing / visual impairment and they also mentaly decline which will affect his ability to communicate and do the simplest of tasks.
Boys with Hunters Syndrome have a life expectancy of about 12 years.
Matthew has multiple appointments at Temple Street Childrens Hospital in County Dublin, which takes us 3 hours each way to travel and also weekly visits to the Mercy hospital in County Cork for his infusions which takes 3 and a half hours through IV access. Matthew also has an Early Intervention Team in Charleville, County Cork.
There is a study currently ongoing for a clinical trial called AGT 182 and also other clinical trials to improve treatment for MPS2 and may be a cure for this progressive disease.
With your help we can find a cure for Matthew.
Thank you all very much in advance.
Matthew is a typical 3 year old. He is a happy little guy who likes to get up to mischief with his older brother. He loves peppa pig, teddy bears, singing and dancing. He is always laughing, despite all thats been thrown at him.
MPS2 is a rare metabolic condition where the body is missing a vital enzyme (iduronate-2-sulfatase) which clears the body of sugars and toxins, without this enzyme, the sugars and toxins are building up in his body.
With this the joints in the body get stiff and sore, and over time his movement will become restricted and in the future will need a wheelchair.
Other problems that develop over time are heart problems, breathing problems, hearing / visual impairment and they also mentaly decline which will affect his ability to communicate and do the simplest of tasks.
Boys with Hunters Syndrome have a life expectancy of about 12 years.
Matthew has multiple appointments at Temple Street Childrens Hospital in County Dublin, which takes us 3 hours each way to travel and also weekly visits to the Mercy hospital in County Cork for his infusions which takes 3 and a half hours through IV access. Matthew also has an Early Intervention Team in Charleville, County Cork.
There is a study currently ongoing for a clinical trial called AGT 182 and also other clinical trials to improve treatment for MPS2 and may be a cure for this progressive disease.
With your help we can find a cure for Matthew.
Thank you all very much in advance.
Organizer
Bob Kiely
Organizer
