Monday, 12 March 2012

Cycling for Turner Syndrome

I felt a little lift yesterday as plans got underway for the sponsored bike ride in memory of Erin. On July 8th some lovely cyclists are going to take part in the Manchester to Blackpool bike ride and collect sponsorship that will go to the Turner Syndrome Support Society. I have written previously about how valuable this charity is. They provide support and friendship to women with Turner Syndrome and their families. They also liaise with medical services and raise awareness of the condition. This is much needed. It is hard to believe that I had never heard of Turner Syndrome 12 months ago, but now it has taken my baby girl from me and changed my life completely.

The presentation of Turner Syndrome can vary between women. For Erin, we had been told that it would result in her being short in stature and she would need to have regular growth hormone injections throughout her life. She would also have been infertile and may have experienced some difficulties with learning. We had also been warned that she may have a congenital heart defect - although it was not thought this would be too serious. Tragically this heart defect took Erin's life. We had never expected this and are now left trying desperately to keep her memory alive and say thank you to the amazing organisations that helped us.

So far 11 cyclists have signed up for the bike ride and about another 10 have shown some interest, which is fantastic. I have created a justgiving page here I have chosen a target amount of £1500 - it would be amazing if we could reach that. My husband has already been out on some training rides. I don't think I will take part in the ride - I like to see myself as 'team manager'. Hopefully I will be able to promote the fundraising page on twitter and get some sponsorship for the cyclists. I also need to have a think about transport on the day and maybe getting some Erin's Gift t-shirts - that would look great.

Once again I am moved by the generosity and support of friends and family. I really do appreciate the time and effort they are taking to help us raise money in memory of Erin. It means a lot to us.

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