07 Feb Harlow charity founder aims to raise awareness for fatty oxidation disorder
A local nurse from Harlow and mother of two who is behind the charity The Metabolic Foundation has spoken about her journey and her desire to raise awareness for fatty oxidation disorder.
Gemma Holtby told us “I got diagnosed with a rare metabolic condition, known as a fatty oxidation disorder called ‘very long chain acyl dehydrogenase deficiency’ in 2012 after 10 months of investigation after the birth of Liam my second son. Vlcad has caused me to have muscle damage so I am now disabled and use a wheelchair and mobility scooter to get about, and my husband is my main carer”
Now moving on from this she has launched a charity to support other families and individuals around the UK. The Metabolic Foundation provides information, advice and support to all families with fatty oxidation disorders within the UK – With key emphasis on improve understanding of fatty oxidation disorders they also fundraise for specialist hospitals who have supported them with their own conditions, with a firm belief that every patient and family deserves the best possible care.
Gemma went on to say “Myself and my husband Adam have run many fundraisers together for other charities within metabolic disease, but in 2015 thought the time was right to start helping others, as they would benefit from this so we decided to expand to do more to help others in our situation.”
The Metabolic Foundation are always looking for families or individuals who require support or advice and are also happy to discuss fundraisers for those who might be in need. You can view their past work on: http://www.themetabolicfoundation.com/what-we-do/