Every day counts for Harvey as his little body deteriorates, his organs growing faster than the six-year-old skeleton that houses them – but there is hope, only it is taking too long to arrive.
A new drug that was approved in April last year, which would slow down the effects of the ultra rare disease, is now available in ten European countries, but is yet to be given out at all on the NHS.
Harvey Brown is one of only 77 children in this country with the Morquio condition, so it is not at the top of the list when the NHS decides which new drugs they can give out. We are all aware of the pressures on our health service to save money and use their resources to help as many people as possible. However, we question the need to keep mums like Vikki waiting for a decision when each day she watches her beloved little son get worse.
Speaking to the News this week she told us of another boy Sam, the very same age as Harvey, who took part in the trial for this new drug Vimizim and she noticed a remarkable difference in him.
It is not clear exactly what the costs are at this stage to introduce this drug that would at least extend Harvey’s life beyond his early twenties and would certainly improve his standard of living. These are questions we will be asking, joining the charity The MPS Society in its campaign to give Harvey, Sam and the 75 other kids a fighting chance.
Please visit www.mpssociety.org.uk to help or donate.
See Harvey’s story here