Metabolic Support UK are proud to support patients and families with Inherited Metabolic Disorders but we couldn’t do it without the help of our community and your efforts to fundraise and raise awareness of Inherited Metabolic Disorders. From your help with fundraising, we can continue to expand our services to support more patients and families with Inherited Metabolic Disorders and to develop new projects for our community.
In this blog, we’d like to introduce you to Ali, one of our amazing fundraisers and supporters, who shares her story and why she wanted to volunteer for Metabolic Support UK and help us raise awareness of Inherited Metabolic Disorders.
“Hi, I’m Ali. I’m 44 years old and my youngest daughter, Tayla, who is now aged 9, has Ornithine Transcarbamylase Deficiency (OTC). She was diagnosed in 2012 after we were rushed from Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had OTC.
We were then transferred to the Evelina Hospital in London where we spent just under 2 weeks. After that, we were transferred back to Musgrove Park Hospital for a further 3 days.
It took a while to wrap my head around the whole thing but after discussing it with my partner we decided our only option was for me to quit my job, as someone needed to be on hand for Tayla 24/7.
I decided I wanted to become a volunteer for Metabolic Support UK because I have so much time on my hands. Going from working a 50-hour week to nothing has been really frustrating for me, as from the age of 14 I’ve always worked. I’ve struggled with depression and anxiety. So, becoming a volunteer has done wonders for me, and because of all the support we have had, I just want to give something back!
I intend on holding coffee mornings and cake sales, as due to me unfortunately fracturing my knee 4 years ago, I’m unable to do running or anything like that.
I set up a fundraising post on my Facebook profile and within a week, I had already raised £130. I do have a larger fundraising goal, which I’m very determined to reach.
I think more awareness needs to be raised as before Tayla was diagnosed I never even knew Metabolic Disorders existed! I’ve already had some amazing support from family and friends, who are willing to help with any events I hold. Being able to become a volunteer really has changed my life and it’s really great that people want to help and listen.
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
Thank you so much for your support, Ali! Your support is hugely appreciated and will enable us to reach out to more people with Inherited Metabolic Disorders.