#fundraiserfriday: From finding out I was expecting a baby to saying goodbye to my inspirational little lady

henrietta

In the short space of 18 months, Victoria Guthrie went from the elation of finding out she was expecting a new baby to saying goodbye her ‘inspirational little lady’. Victoria and Henrietta share today’s #fundraiserfriday star.

Henrietta’s story

After a normal pregnancy, baby Henrietta surprised everyone with her quick entry to the world, which revealed that she had Noonan syndrome and an extensive list of life limiting conditions. These included JMML which is a form of Leukaemia, Tetralogy of Fallot and bi-ventricular hypertrophic cardiomyopathy, characterised as the thickening of both sides of her heart muscle. Henrietta was unable to feed naturally which meant that although Victoria and Henrietta were able to have 9 months of ‘big girl sleepovers’ at a children’s hospital, 7 months of which were in an intensive care unit, Henrietta never got the chance to go home with her devoted family.

Cardiomyopathy UK

During her time with Henrietta in hospital, Victoria saw a lot of incredible charities doing amazing things for the seriously sick children around her but noticed that there were fewer donations given to cardiac babies like Henrietta. Due to the devastating news that Henrietta’s prognosis was a life expectancy of less than 12 months, Victoria felt it was vital that Henrietta experience as much as she could within the hospital walls and that “seeing some children receive virtually nothing, particularly on Christmas day in ICU” is an image she will carry with her forever. Victoria vowed then that she would find a way to help those living with cardiomyopathy and help people understand that heart conditions aren’t just found in the ageing or with poor lifestyles.henrietta-2

Taking on the London Marathon

As a way of coping with the death of her daughter, Victoria turned to running, inspired by her youngest daughter who had become fixated with Mo Farrah. During one longer run, Victoria decided that running the London Marathon would be a great way to honour her “little lady” and teach Henrietta’s siblings that good things can come out of tragedy. She adds “such an inspirational and aspirational event can challenge you personally whilst also allowing you to raise much needed funds for charities like Cardiomyopathy UK.

Victoria tells us that finding time to train can be very challenging at the best of times but with a young family of 4, Victoria’s training has been a full family effort. Rising as early as 4am, with any lie-ins being replaced with long runs and hill sessions.

Victoria’s motivation

If you ask Victoria what will keep her running, even in her bleakest moments, the answer is simple: love.

“All I want is people to feel supported and not to suffer alone, whether they are the patient or the family. We know first-hand that a diagnosis can rip your world apart. Everyone affected deserves the support of Cardiomyopathy UK – to know it’s always there for you. And with Cardiomyopathy affecting people of all ages and being the main cause of sudden death in young people under 35, its work is vitally needed.”

How you can help

You can support Victoria’s challenge in honour of Henrietta by donating to her Virgin Money Giving page. Every penny raised will help to make a huge difference:

  • £7 pays for a 10 minute call to a specialist helpline nurse,
  • £10 pays for 3 families who have a child with cardiomyopathy to get the right information,
  • £20 pays for 4 people to receive a ‘living with cardiomyopathy’ pack,
  • £60 pays for 150 people newly diagnosed to get detailed information from the website,
  • £150 pays for a doctor or nurse to be trained at the annual conference.

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