A Millwall-mad boy and his family are celebrating being able to get the drugs he needs to thrive with an event this week to boost awareness of his rare medical condition and raise funds for charity.
Harvey Brown, 13, has Morquio, an enzyme deficiency which stunts the development of children’s skeletal growth, leaving sufferers with weak bones, a tendency to develop heart disease, and impaired vision and hearing.
We reported in 2016 how Harvey’s parents Dean and Vicki set up a petition to get Vimizim, a drug that is giving Harvey a much better quality of life, available on the NHS. He was given a five-year trial and now the family has been told that the drug will be available indefinitely.
Now Harvey and his family are raising awareness and funds for the MPS Society in the Blue marketplace on Saturday from 10am.
“He still gets tired, but he used to get really tired,” said Harvey’s proud dad Dean. “He never really had a colour before, he was always pale. But now he has a nice colour. When we look back at photos, you can see it definitely is working.
“The lady from his metabolic team, she said he was star pupil with it. He had to go have lung function and walking tests. She just said that he was fine, passing with flying colours. If he was a pupil, he would be star pupil.”
Even though Harvey’s condition has been debilitating, it has also helped him make a friend. He and another boy called Josh with a similar condition have been talking virtually for more than five years. Harvey and Josh, whose family lives in Dorset, were going to meet up earlier but this had to be postponed because of the Covid-19 lockdown.
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But Harvey’s Millwall fandom helped bridge the gap. Millwall played Bournemouth on Saturday (May 7) and Harvey and Dean got to meet Josh as part of their trip. “It was really emotional,” Dean said. “Well it was for everyone apart from Harvey and Josh, they were just running about playing football together.”
Football is Harvey’s biggest hobby and he “has got a good little kick on him,” Dean said. “He gets tired, but he’s footie mad. If you pull anything out from under his bed to look for something, fifteen footballs will come rolling out.”
Look out for Harvey and his family’s table, which will be up from 10am at the Blue marketplace on Saturday raising money and awareness for the MPS Society.
Love and respect for Harvey, Dean, and Vicki, from one of the Millwall family on the wrong side of the Atlantic.