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Appeal for support on MPS Awareness Day

MPS awareness

Published by Carol Musgrave at 2:17pm 15th May 2018. (Updated at 2:26pm 15th May 2018)

A Farnham dad tells us of his determination to fight back - when he found out his young sons suffered from a life-limiting disease.

Bob Stevens, who is the Chief Executive of the MPS Society was speaking to us on MPS Awareness Day (May 15) to raise awareness of the disease and to call for better support and research. 


Bob's two boys, Oliver and Sam, now 18 and 16, were toddlers when they were diagnosed with MPS II, a rare and incurable disease.


Also known as Hunters, it is an inherited condition, described by the MPS Society as "a Mucopolysaccharide storage disorder also known as Mucopolysaccharidosis Type II (MPS II).
"All individuals with MPS II have a deficiency of the enzyme ‘iduronate sulphatase’ which results in the accumulation of Mucopolysaccharides.


"The accumulation of Mucopolysaccharides is responsible for many problems that affect individuals with MPS II."


There are different levels of severity, and symptoms include "progressive developmental delay and severe progressive physical problems."
Bob says he was in a very dark place when he first heard the diagnosis - but was pulled out of it by none other than his toddler son: "He looked at me with these big brown eyes and those big brown eyes said - 'what's up Daddy?'"


"And it was at that point that I realised - it's not me that has the problem, it's my son -  and I need to support him and protect him as best as I could."


Today, the MPS Society is calling for better training of GPs in diagnosing it - and for research into treatment.


Bob says: ""Just because you're rare, doesn't mean that you don't have the same right to treatment and a good life.


"It's very easy for our politicians to turn around and say we're not going to fund this treatment or that treatment, because there is such a small number of patients.


"That's morally wrong, and need everybody to get behind us and send that message, that we have a duty to our young people in this country to give them the best outcomes that we possibly can.


"Being rare shouldn't mean that you are alone."

The MPS Society is also using the day to thank its "MPS Heroes"  whom Bob says are the nurses, physiotherapists, family members, friends and any other people who offer small acts of kindness and often unseen support to sufferers and their families.

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