Scarborough and Whitby MP, Robert Goodwill MP met with 3 of his constituents in Parliament this week.
Scarborough resident, Tracey Muschamp and her daughters Charlotte and Katie, suffer from a rare genetic condition known as 22q11.2 deletion. One in 1800 live births suffer with the genetic condition 22q11 deletion syndrome, (latest research from the USA about to be published actually halves this to 1 in 900). The deletion is responsible for a wide range of conditions including Velo Cardio Facial Syndrome and DiGeorge Syndrome. Often sufferers have to undergo surgery to correct heart defects and other complications.
The trip was organised by the Max Appeal, the charity set up to give support and raise awareness of this condition that affects families all over the country. The day was spent with a tour of Parliament followed by a meeting with Alistair Burt MP, Minister for Care and Support, where families were given the opportunity to ask questions regarding their condition, and what support there will be in the future for them.
Robert said, "I hope that this event here in Parliament will help raise awareness of this syndrome and result in better understanding and earlier diagnosis by doctors who sometimes miss the symptoms."
For more details and ways to help this condition head to the Max Appeal website.