Shannon's trip to London

We were all over in London for Shannon's visit to Great Ormond Street Hospital.

She done so well on the flight. Although, she is something of a seasoned air traveller at this stage with all the trips from Ireland to England.

She is currently having a monthly check up at the RVH, Belfast and six monthly at GOSH, London.

There was some concern about the rising level of antibodies that had developed over the course of the last couple of months. A biopsy had to be carried out to ensure that there was no rejection of her heart. It is not a very pleasant experience to bring her to the cath lab and watch her being put to sleep- struggling usually!!! However it is a necessary part of her treatment- the biopsy can show up harm that may not have manifested itself in the form of any symptoms.

Shannon had to have an ABO mismatch transplant which means that her blood group did not match that of her donor. Due to the age she received her heart transplant- 13 weeks old- her immune system had not fully developed reducing the possiblity of rejection. However there is always a risk of rejection which is managed with the daily intake of immunosuppressant medication.

Shannon will have to take this for life.

Thankfully the news was good and there is no sign of any rejection. The medical team have no explanation for what is causing the increase in antibodies. But the important issue is that it is not affecting her heart.

We look forward to the wedding of friends of ours who have bestowed the honour on Shannon of asking her to be their flower girl. She got her pretty dress and will look beautiful. I will post photos in due course.

We then holiday in the West of Ireland in August all being well. We just might get some good weather.

Great News on the other side of the Atlantic- a little fighter by the name of Tillman Chesney from the US is going home. He was very ill in hospital for a long time and required a heart transplant. He has taken a while to recuperate after his transplant but is now finally going home...I initially came across his story on You tube and have been in contact with his parents.

Well done to all!!!!

Adrian

Blues on the Bay Warrenpoint

Just had a wonderful weekend of music in Warrenpoint.

We had Shannon down to see some of the music. Her first Blues festival!!!

Once again I think the festival was a resounding success.

The highlight for me has got to be a guy by the name of Shawn Jones.

Check out his website http://www.shawnjonesmusic.com/

I have seen him play a couple of times over the last few years. I just love seeing good guitar players.

I bought his live recording 'Live at Mozambique' . This really catches the spirit and intensity of his live show.

His song Heaven's Daughter caught me by the name initially. Shawns lyrics really captures the need to have a positive attitude no matter what you face in life. Something we should all aspire to even when life does get tough.

I just wanted to share that!!!

Adrian

London Marathon Update

Unfortunately Martin Gorman's London Marathon attempt did not go ahead this year.

He was forced out as a result of injury. However, the good news is that he was able to defer is entry until next year.

He recently posted this message to the site:

"Sorry to let you all down but I have developed pertendintis (burning pain in the achilles). I have tried to rest and get treatment (every day) but after three weeks i am unable to run three miles. I will sadly have to pull out of LFM, but please dont stop donating its a brilliant cause and Shannon, Adrian and Donna are putting in great efforts to raise the profile and funding for this great charity. So please continue to give generously,there will be other marathons and other fund raising events but your continued support is needed."

I can only reiterate that message and thank you in advance for your generosity and support for the charity that plays an important role in our lives

P.S. He was also able to run a couple of legs in the Belfast Marathon recently in aid of Heartbeat. The efforts continue...

Transplant Kids

The Transplant Kids website we came across when transplant was first mentioned as an option for Shannon.

It is designed to provide information to help children, family and friends who may have to undergo a transplant.

I logged on initially as a confused and desperate dad looking for some information on the subject of transplants.

It is something you never ever dream will happen to you and your family. However, I did find I was not alone and got great inspiration from the people there who had been through all of the whole transplant process already. It was great to read about the success stories and also get advice about the care/medication etc required post transplant.

A video montage of some of the transplant kids has been posted on youtube. It features our little star, Shannon.

I have posted a link to that and the Transplant Kids website. Please go check it out!!!

http://www.youtube.com/watch?v=Z2V1yCSbuXg

http://www.transplantkids.co.uk/

London Marathon for Heartbeat

(L to R Martin, Shannon and Adrian)

Shannon, Donna and myself have a lot of people to thank for getting us through this arduous journey. First and foremost , we are eternally grateful for the courageous decision made by the donor family, in their time of sadness at the loss of a child, to give Shannon and our family the most precious of gifts, Life.

We are very grateful for the help and support of all the medical staff at the Clarke Clinic (Cardiac ward) at the Royal Belfast Hospital for Sick Children, Belfast and Great Ormond Street Hospital, London where she underwent her transplant. Both hospitals now share her post transplant care.

A very close family friend, Martin Gorman, from Newry, County Down has achieved the remarkable feat of automatic qualification to run the London Marathon on 22 April 2007. This is a privilege only granted to those who have run other marathons in under three hours. His success at achieving that in both Belfast and Dublin marathons last year is a testament to his dedication and commitment.

Martin has very kindly agreed to raise money by way of sponsorship of his London Marathon run. While trying to achieve a personal best!!! It is very appropiate that London is the venue and while London and Great Ormond Street mean so much to us. It is closer to home that we wanted to focus our appeal.

Heartbeat is a Northern Ireland registered charity, which was formed in 1984 as a support group for parents who had children with congenital heart disease, living in Northern Ireland, regardless of how slight or severe their condition may be. Heartbeat’s financial contribution to Clark Clinic is enormous - pumping more than £50,000 each year into much needed equipment. With finances in the Health Service at an all-time low, Clark Clinic relies heavily on contributions from Heartbeat to constantly update and purchase new equipment.

We would be very grateful if you make a donation to support Martin’s efforts in the London Marathon to raise funds for Heartbeat.

Please email your support to heartbeatnilondonmarathon@yahoo.co.uk

www.heartbeatni.co.uk

The Inspiration

We are the Curran Family from Warrenpoint, County Down, Ireland.

My name is Adrian. My wife is called Donna. We have a beautiful daughter called Shannon.

This blog is inspired by her.

She underwent a heart transplant at 13 weeks old. The youngest ever in the North of Ireland.

The purpose of the blog is to share her story with the world.

The prospect of becoming parents was one we were both looking forward to . The challenge of looking after a new baby was daunting but one we were prepared and ready to take on.

We never anticipated that the challenge we were about to face with the arrival of Shannon was to be the most harrowing and life changing experience we had ever faced.

Shannon is now 15 months old and is thriving. We look at each day and while we are overjoyed at being given the chance to share all this precious time with our little girl. We are eternally grateful and inspired by the courage of the parents who made the decision, in the face of such sorrow in their own lifes, to donate their child's heart to allow ours to live.

Hopefully, this story will inspire everybody out there to really live each and every moment.

Ensure that all your loved ones are cherished and try and not let the trivial things in life get a hold on you and distract you from what really is important!!!

The following link is to the BBC news website. We went public with Shannon's story for a number of reasons. First of all, we are extremely proud of her and all that she had to go through.
Secondly, we wanted to thank the hosiptal staff for all they done for her and us.

However, most importantly, we wanted to raise awareness of the issue of organ donation and to express our deep admiration for the family, in their time of sorrow, who made the decision to give of child her gift of life.

http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/6035347.stm