Sometimes real super heroes live in the hearts of small children fighting big battles
Cian McDonnell-Lynch. Lost his battle on October 5, 2015
A quote from the family ; “Our beautiful boy is with the angels now. He fought so hard. Heaven is so lucky to have him. We are broken hearted. His Mammy, Daddy and big sister Chloe held his hand until the end. Fly high our beautiful boy where there will be no more suffering or pain”.
I am writing this post with a very heavy heart. I personally did not have the privilege to meet Cian, but I have felt a very strong connection to him and his family during his fight for life. When I would read his mother’s post, I could relate and feel her pain in her words she felt for her child. I have contacted with the family, through their site, to give my support and express prayers we’re being sent out to them.
Cian was admitted to Crumlin Children’s Hospital to have his procedures, which was a liver biopsy and PEG insertion. The results of the biopsy was to determine, so that he may return back to Boston to be placed on the double lung transplant list. Unfortunately, during his recovery, this brave little soul, endured complications with his oxygen saturation.
Cian was surrounded with his family. His mother, father and big sister held his hand until the end..
Cian was loved by thousands of people. The fundraising events to help raise the money for his transplant was heart touching. During his short time on this earth, this little guy brought so many people from all over the world together.
To his family: My family here in Massachusetts USA, we are sending our heart-felt condolences to you. Cian will always be in our hearts.
Below is a brief summary of Cian’s medical condition.
Cian who was only four years old and his family traveled to Boston Children’s Hospital in the hopes that one of the world’s premiere hospitals can help keep him alive.
Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth. It’s a very rare disease
It affects one in a million. And Cian is actually at the more severe end of the syndrome.
The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.
They’re actually microscopic blood vessels; they’re malformations, and the oxygenated blood is not getting around to his whole body.
They were told, that it’s actually progressing very quick, so they we’re just really hoping that he’ll be accepted onto the transplant list here in Boston.
Cian was given only a few months to live.
Cian was the first child that they’ve seen with this condition, It’s just so rare. Cian needed a double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
Cian and his family came to Boston Children’s Hospital as their last hope. The hospital begun running tests on Cian to determine if his body can handle the transplant.
The family’s Irish insurance policy will not pay for the surgery here in the states.
Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.
That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated. They were so close to reaching the amount that they would need to give Cian his gift of life. Last count I believe they were at $600,000.
Please keep Cian’s family in your prayers.
Cain is now with the angle’s, in the sky. I would like to dedicate this song to Cian.