Story
Twin to Twin Transfusion Syndrome (TTTS) is a rare but life-threatening condition that affects 10 to 15 percent of identical twins that share a placenta. If untreated, 90 percent of babies are likely to die. Even with treatment, 50 percent of surviving babies are likely to be disabled or have a long term condition.
On the 12th February 2017 we lost our identical twin boys 23 weeks into the pregnancy. They had developed TTTS and despite the best efforts of the staff at both Newcastle RVI and Kings College Hospital London, they could not be saved.
Currently, there is too little research conducted looking at the most effective treatments for TTTS in the short or longer term. There is no comprehensive outcome data collected and published in the UK so doctors cannot compare what is working best and why. There are also no longer term follow ups to understand the longer term consequences of individual treatments.
Fundraising to enable further research into this devastating condition is vital. Tamba (twins and multiple births association) not only complete research into TTTS, but also provided us with a range of different support options in our darkest hours.
My husband Ed, my Dad Gordon, and my friend Beth ran the GNR last year for TAMBA and raised over £1000 (I was pregnant with baby Brown at the time so had to sit that one out!)
This year, Ed and my Dad have agreed to run again, and myself and my Mam Jill will be joining them! Baby Seth will be cheering us on from the crowd!
Again we want to remember our boys, but also we want to raise as much money as possible for Tamba and TTTS research. We hope that one day, no one will have to go through what we have been through.
Any donation - however big or small - would be greatly appreciated.
Thank you very much,
Kayleigh, Ed, Gordon & Jill
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