Sienna and Hypoplastic Right Heart Transposition of the Great Arteries and Ventricular Septal Defect

This is taken from Kerry’s fund-raising page, she has given me permission to use it. Thank you Kerry

Thank you so much for taking the time to look at my fundraising, a lot of you may have already heard of our daughter Siennas story, which can also be read in the CHSF leaflet her photos are also on the top of their website.

Sienna was born on the 24th March 2006 and at 6 weeks old we nearly lost her as it was at this point we learnt the terrifying news about Sienna and a large rollercoaster of events unfolded.

Her condition is Transposition of the Great Arteries (Major Arteries wrong way round), Hypoplastic Right Ventrical (under developed chamber) and a Large Ventricular Septal Defect (VSD) (hole in ventricle wall), she had to undergo a 9 hour open heart operation in order to save her life in May 2006 but unfortunatley her condition proved to be un-cureable and were not able to do what is known as the switch operation instead they carried out a procedure know as PA Banding.

Sienna will need lots more operations as she goes through life, but in the mean time Sienna remains such a happy little girl with a strong personality, although very small for her age she is now very talkative and clearer. She is walking around and doing things a normal child of her age would be doing, although she gets very out of breath and tired easily, but despite her condition she is also proving not to let things get in her way and is always full of smiles.

Update 18.06.08
Sienna is currentley on the waiting list for her next major heart op, been told around 15 hours for the op :( with 1 in 4 chance of her getting though but with out giving her this chance she will not see it much past 12 months, she’s on priority at the moment so not long couple of weeks before she’s in.

Update 05.07.08
Sienna had the call on friday 27th June, we had to take her to LGI on sunday morning, on the monday at 8.15am sienna went down to theatre, returning 16 hours later, this was the longest day of our lives, sienna had many complications during surgery and is lucky to be with us the surgeon says shes one in a million, and he has not seen any one with such complex heart defects as hers, it is thanks to her surgeon and all the staff at the LGI that she is still here. She will need more and more ops as she gets older and will require this funding for the rest of her life in order to keep her and many others with us today.

It is due to the above that me and my husband Pete along with family and friends cannot thank Leeds General enough, they saved our little princess’s life and continue to do so with 1000′s of other children in simular situations, a simple thank you to them just did not seem enough. This is our way of giving something back to them.

We hope that with all the money that is so kindly donated by yourselves that a cure will be found for our little girl before it is too late, we have been told to expect her life to be in the late 20′s

So I ask you to please help me in providing the funds to fund future research, whether it’s 1p to £100 any donation is so much appreciated by myself and Sienna.

Thank you for reading

Kerry and Sienna xxx

To donate, please click on the link below