Living with an Inherited Metabolic Disorder comes with many challenges. These rare conditions not only affect the patients themselves, but also family, friends and the wider network of people involved with providing care and support on a day-to-day basis. Here at Climb, we think of you all as our Metabolic Heroes – you are all incredible!
To celebrate these inspirational people within our special community, we are launching an exciting new campaign…
My Metabolic Hero provides an opportunity for those affected by Inherited Metabolic Disorders to share stories about people that bravely live with conditions, or have helped and inspired them by nominating them as their Metabolic Hero.
Many things can make a Hero, from a simple act of kindness to saving a life.
Your Metabolic Hero may be:
– A patient – child, young person or adult – who despite their condition, reaches milestones or helps others
– A friend or family member who raises awareness by taking on challenges and fundraising
– An organisation that provides a listening ear and advocates to improve patient’s lives
– A teacher who ensures that school is a safe and inclusive environment
– A medical professional who has been involved with the patients journey and made a difference
…and anyone in between!
Whoever your Metabolic Heroes are, we’d love to hear all about them. Let’s celebrate these inspirational people within our special community!
Who’s your Metabolic Hero?
We hear so many heartwarming stories about people who make a difference to our families, we asked some of our friends to tell us about their Metabolic Heroes…
“My Metabolic Hero is my wife Sarah. Our son, Laurence Michael, was born in Belfast in September 2014. Within four days of birth, we were transported to Great Ormond Street Hospital (GOSH) in London, and given the news he was diagnosed with Citrullinemia, a rare Inherited Metabolic Disorder which causes ammonia and other toxic substances to accumulate in the blood, which in turn poison the brain and other organs. We were totally shocked and blind to what lay in front of us, a point at which we were put in touch with Climb to get some more information.
Following treatment in GOSH, and a further stay at our local hospital in Belfast, we were able to take Laurence home, but it was totally different and so hard at the beginning. Over the next year we saw Laurence admitted at least 20 times to our local hospital. We knew that wasn’t the life we wanted for him -we wanted him to have a liver transplant. We passed the assessment in Birmingham Children’s Hospital to go on the waiting list for a transplant, but were told he could be waiting a long time.
Myself and Sarah were tested to be possible live related donors and Sarah was a match, so on 7th October 2015 my wife and son both went into surgery. The surgery went as planned, Laurence was out of ICU within 16 hours and Sarah was discharged five days later. We brought Laurence home three weeks later to Belfast and our new life began.
Life has been nothing but positive ever since! Firstly, we competed in a relay team in the Belfast Marathon to raise money for Climb, then Sarah and I got married in December 2016, and in June 2017 Sarah learnt she is to graduate from the University of Ulster with First Class Honours in Leisure and Event Management. Sarah started her degree before Laurence was born, and when she decided to take a year out when she was pregnant with Laurence, we never imagined it would be two years, involving life changing surgery for her and for our son. I am extremely proud of her and my son every day.”
“I have 2 boys – Xander and Max, aged 7 and 10, and our Metabolic Hero is Professor Sufin Yap at Sheffield Children’s Hospital.
Xander and Max both have an Inherited Metabolic Disorder called Homocystinuria (HCU). This means that their bodies can’t process the amino acid ‘methionine’ which causes a harmful build-up of substances in the blood and urine. It is nearly 4 years since their shock diagnosis and Professor Yap has been there from day one, with surprise phonecalls, gifts for the boys, and just going above and beyond. Last year Max was extremely poorly and she literally saved his life, and kept us sane.
She has also educated us at every appointment we attend by telling us facts and giving us titbits of information that have made things easier and educated us. She is amazing.”
“My mum Jo is my Metabolic Hero. She has given up her job and life to look after my brother Louis. She spends every day on the phone to hospitals and battling with multiple professionals in order to get Louis the best possible treatment for his condition, a rare Inherited Metabolic Disorder called Ornithine Transcarbamylase (OTC) Deficiency. She’s currently waiting for a call for Louis to have a liver transplant and has put her life on hold for him. She has been to hospital and back most days of the week lately because of Louis’ ammonia being up and down and I could never imagine dedicating my whole life to someone like that. She also does a lot of fundraising for Climb in her spare time!”
Nominate your Metabolic Hero
1. Nominate your Hero using the entry form below by 31st August 2017. Tell us all about them, and why they are so special to you!
2. In September, all nominations will be featured on our website and open for public vote. Share, share share amongst everyone you know and encourage them to vote for your Hero!
3. The nominated Hero with the most votes will the overall Metabolic Hero of the Year, which will be announced at our Annual Conference on Saturday 14th October 2017 in Birmingham.
4. The winning Hero will win a special award, along with a short break at Center Parcs. (and the person that nominated them will win one too!). All nominated Heroes will receive a commemorative certificate.
Share your story on Social Media
Tell everyone about your Metabolic Hero (or Heroes!) on Social Media. Please tag us @Climbhq and use the hashtag #mymetabolichero
Nominate your Metabolic Hero and WIN a short break at Center Parcs
How to Enter
To nominate your Metabolic Hero, please complete the form below and tell us all about your Hero; what makes them so special and why they deserve to win!
If you are nominating a patient, tell us their story, if you are nominating someone who has helped you, tell us all about what they do to make a difference. If you have more than one Metabolic Hero (lucky you!) please feel free to complete a nomination for each of them!
All nominations will be featured here on our website in September 2017 and will be open to a public vote, so the more engaging your story is, the more your nomination will stand out! This is the time to share, share, share amongst all your friends and family, and encourage them to vote for your Metabolic Hero!
The Metabolic Hero with the most votes overall will win a short break at Center Parcs, and even better – the person that nominated them will win one too!
Please read our FAQs for further information and terms and conditions.
Closing date: 31st August 2017.