Take on the Chain of Life Challenge at Mont Saint-Michel!

Hello,
My name is Alexandra Petit Lereffait, I am 43 years old. I live in Normandy region of France. I live with my husband and 3 daughters in the pretty Normandy countryside. 

I was born with a rare disease called Buckley's syndrome. This disease causes chronic lung infections. In 2015, I suffered a syncope, and the doctors discovered a second rare disease called "pulmonary arterial hypertension" and told me I was already terminally ill. The only solution was a lung transplant. But the problem is that no one in the world has yet been transplanted with Buckley's syndrome. This means that I could die without being eligible for a transplant. At that point, I realised that my life was over, that I wouldn't have the chance to see my daughters grow up. My youngest was only 4. I cried all day that day. I wanted to live and be able to enjoy my daughters and my husband. So, I motivated myself and kept hoping that a transplant was possible for me.

Finally, the medical team agreed to put me on the waiting list for a transplant. I was registered on  March 9th, 2016. On June 4 th, 2016, at 2am, the phone rang, they had lungs for me. We were all very happy with this news but there was still the fear of me dying because, obviously, there were big risks. The transplant took 10 hours, everything went well. The transplant saved my life, but it also saved my family: my husband, my daughters, my parents, my sisters... 

Thanks to the donor, everyone was saved. But it's also thanks to the donor family who agreed to donate their loved one's organs. This is an extremely difficult decision to make. They have to make the decision quickly, while they are devastated by the pain of losing their loved one. It takes tremendous courage and sacrifice, because when they say yes to organ donation, they are sacrificing their last moments with their loved one, because organ donation requires the person to be kept "alive" on a respirator.  They will therefore not be able to accompany him or her during the last moments of his or her life, see their loved one their last breath.

This is an additional pain for them. But they accept so that other lives can be saved. So, we must accompany them, support them and thank them for their decision and their courage. We must honour them, because donor families play a crucial role in the organ donation process. They are heroes in the same way as the donor. 

This is with great pleasure that I have accepted to be the standard-bearer for the Chain of Life Challenge, which this year is honouring donor families.

And it is with honour and pride that my family and I will be taking the Chain of Life flag at Mont Saint Michel in Normandy as a tribute to all donor families in France and elsewhere in the world.

Alexandra

Coming soon