Running For Ruairí

Hi Everyone,

I am doing a 10k run on the 29th of September all because of my little friend Ruairi. Ruairi is the son of one of my dearest friends Rebecca who I was lucky enough to meet 12 years ago during our nurse training. Ruairi was born in July last year and was diagnosed with Williams Syndrome due to a heart condition called supra valvular aortic and pulmonary stenosis, which was picked up after a hernia operation at 10 weeks old. Williams Syndrome is a rare congenital disorder that occurs randomly and affects around one in 18,000 people in the UK. It can cause serious heart and vascular defects and a range of learning disabilities. Individuals with Williams Syndrome have wonderful personality traits; they tend to be very friendly and have an affiliation with music.

Ruairi had lifesaving open heart surgery in May. He continues to tackle many other obstacles that have come his way. He faces these with an abundance of courage and a winning smile. I am so proud to tell you that he goes from strength to strength which of course is mainly due to his loving  parents but also this is due to the impeccable care he receives from the amazing staff at the Royal Brompton Paediatric Unit where Ruairi had his heart surgery, and also the Williams Syndrome Foundation who have provided advice and support to his Mum and Dad throughout this very tough year. We would really appreciate any contribution to these amazing causes to help support babies like Ruairi and their families who I remain in complete awe of.

Raising awareness of Williams Syndrome is very important to Ruairí’s parents. There will undoubtedly be more challenges for Ruairi along the way and it would be great if you could all click on the link below to spend 5 minutes learning a bit more about this rare condition, so that if you are ever lucky enough to meet Ruairi, or someone else with Williams, you will be able to recognise the characteristics, and understand how these affect someone with Williams Syndrome on a daily basis.

https://williams-syndrome.org.uk/what-is-williams-syndrome-6-2/

Donations

 See top
  • Evelyn & Fraser Preston  
    • £50 
    • 4 mos
  • Kevin O'Connor 
    • £20 
    • 9 mos
  • David Keaney  
    • £15 
    • 9 mos
  • Mailis Burton 
    • £10 
    • 10 mos
  • Alex Bursey 
    • £15 
    • 11 mos
See all

Organizer

Liz Emerson 
Organizer
Letchworth Garden City, East of England, United Kingdom
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