For our 40th anniversary this year, we have decided to have a 'Fundraiser of the Month' throughout the year. This month, we have the Brown family. Mum Vikki shares their story below.
“Our son Harvey was diagnosed with MPS IVA Morquio in 2013 and unfortunately, he missed the Vimizim trial for treatment.
We joined the MPS Society campaign for NICE to fund the Enzyme Replacement Therapy (ERT) treatment once the trial had finished. We held yearly awareness days at Harvey's primary school (Surrey Square Primary) and the year six children also made a video and wrote letters to David Cameron, the Prime Minister at the time. We were then taken to Downing Street by Millwall Football Club – Harvey’s favourite football team, on the Millwall bus along with their mascots Zampa and Bolina.
We also started a petition to give Harvey the treatment he needed and were able to collect over the 10,000 signatures needed. Once the treatment was given the go-ahead, Harvey was able to start his weekly infusions. This would not have happened without all the hard work Christine Lavery and the MPS Society had done.
Since then, we have held different events at Millwall to raise awareness. Harvey's brothers, sister, nieces, nephews, aunts, uncles, and cousins have all supported us with these events.
Our friends have participated in fundraising for the MPS Society. Steve Rendell ran the London Landmarks Half and Kevin Downey ran the London Marathon.
We had a stall in April at the Millwall Community Day and raised £150 (£50 from selling MPS merchandise and £100 in donations).
For this year's MPS Awareness Week, we had a stall in the Blue Square Market, where we raised just over £250 (£41.50 from selling MPS merchandise and £210 in donations). We currently have a raffle open for a quad bike. We have sold over £100 worth of tickets for this.
Throughout our time fundraising, we have met some lovely people who have never heard of MPS before. They took some leaflets away with them and will hopefully spread awareness of this rare disease.
We do not know how much we have raised over the years, but we will continue to raise awareness and funds for the MPS Society. The support and research the charity does are too important to be ignored.”
Collectively, the Brown family have raised over £3,000 since Harvey’s diagnosis.
At the MPS Society, we’d like to say a huge thank you to this entire family for their ongoing support!
Edited by Rhia Arden
A big thank you to all of our Fundraisers of the Month for raising funds and awareness for the MPS Society. Special mentions also go to Lee Shepherd, Dan Hall, Mrs Carol Westland, Gary Harlock, Sarah Cutler, Sally Mitcham. Maurice Patton. Bob Stevens and Bradford University.
More information:
If you are interested in donating to the MPS Society, please click here.
