This morning, Cian’s mother Lisa wrote a message of thanks and love
“I want to thank everyone for the messages of support during this difficult time. I haven’t read most of them yet or answered you all but thank you. Donal, Chloe and I are completely devastated by the loss of our beautiful little Cian. I am just so honoured to be called Cians Mammy. He thought me so much and definitely made me a stronger and better person. He made alot of people better people. In a lifetime no one would endure what he did in four short years yet he always had a beautiful smile on his face. I love my boy so much. I can’t imagine what is ahead and life without him. No parent should ever have to endure the heartache of losing a child. I can’t describe this awful pain. I’ve never felt pain like it before. I’m going to try to be strong for Chloe and Donal and I know Cian will help us too. Our house was always full of chat and fun because of Cian. Peppa Pig was always on. He bossed me around the place and I loved it. He always told me he loved me. I’ll miss his lovely big hugs and kisses. I’ll miss our busy life. Anybody who met Cian or heard his story were touched by him and loved him and his beautiful personality. I am so proud of Cian. Last night hundreds of people gathered outside our house with candles and sent lanterns into the sky. They even sang one of Cians favourite songs “Twinkle Twinkle Little Star”. It was so beautiful.
Cian was always such a special little boy, now he’s a beautiful angel.
I hope you are happy little man wherever you are and I promise to keep your memory alive. I know I’ll see you again. Thank you for everything.”
I love you so much forever. From your Mammy x
My message to a mother who lost her little man, who never received his transplant
Lisa, I cannot even imagine the pain you have within you at this time. Your son Cian, touched my heart following his journey. The love that the world showed, with all their support in helping Cian in achieving the funds to be eligible to be able to place on the double lung transplant list in Boston. I have many times, wrote about Cian on my site to help get his story out. Many of my followers, sent messages of hope and prayers for your son. Cian will always be in our hearts, and never forgotten. I showed my husband yesterday the post I wrote. As he was reading it, tears were rolling down his face. He told me, he cannot imagine the pain a family must feel in losing a child.
I truly feel that, Cian’s journey should never be forgotten. My daughter Lauren was placed on the heart transplant list on March 13, 2013. She received her gift of life on December 30, 2013. Just as Cian had a very rare disease, my daughter Lauren was also diagnosed with a very rare muscular disease called Laing Distal Myopathy. We were told that, there are only five other people in the world with this disease also. And Lauren also has Scoliosis. When she admitted into the hospital, Brigham and Women’s in Boston Ma., she was in heart failure at the time, that is when they brought up a transplant.
I truly feel people need to be educated about transplantation. If you need one, you are not automatically place on the list, like the movies perceive. So much is involved in the process of being accepted. We were very close that Lauren was not going to be placed. I can remember many nights praying that Lauren will be given the chance for a second life.
When I think of all the thousands of people who helped Cian raise the funds he needed, to come back to Boston to be able to be placed on the transplant list, it is very humbling. My feelings, I believe our world needs to change. If you have insurance, I find it unbelievable that the hospital in the USA wouldn’t accept it. I know this will not bring Cian back, but I feel this needs to be addressed.
From one mother to another, sending prayers to your family from ours
I have a follow button on my site, if anyone would like to follow my post. Thank you
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.
Organ Donation Called Ultimate Gift of Compassion
TUESDAY, 29 SEPTEMBER 2015
To mark the visit of Pope Francis to the United States, NJ Sharing Network is reminding the public that most religions, including Catholicism, support organ and tissue donation. Pope Francis described the act of organ donation as “a testimony of love for our neighbor” when he met with the Transplant Committee for the Council of Europe, which gathered in Rome last year.
“As Pope Francis travels in the United States, we want to spread his poignant words about organ donation. At NJ Sharing Network, we know that donation is a generous, life-saving gift. We are grateful that Pope Francis has spoken so positively about the gift of life,” said Joe Roth, President and Chief Executive Officer of NJ Sharing Network.
Pope Francis is not the first pope to speak in favor of donation. Pope John Paul II said, “The Catholic Church is clear that, in itself organ donation is a good and meritorious thing. It’s a powerful expression of human solidarity. Such actions can help build a culture of life, a culture in which life is cherished.”
Not only does the Church accept organ, eye and tissue donation, it also recognizes donation as a great act of charity and love. Pope John Paul II also said, “The Catholic Church promotes the fact that there is a need for organ donors and that Christians should accept this as a challenge to their generosity and fraternal love. One of the most powerful ways for individuals to demonstrate love for their neighbor is by making the informed decision to be an organ donor.”
Nearly 5,000 people in New Jersey are waiting for a life-saving organ transplant. This miraculous task of providing life-saving organ transplants to the men, women and children on the transplant waiting list would not be possible without the selfless decision of those who register as organ and tissue donors. Registering as a donor makes a strong statement about the kind of person you are and want to be and relieves your family from the burden of having to make the decision for you during a time of trauma and loss. One organ and tissue donor can save and heal the lives of more than 50 people – a life-changing gift to the recipients, their family members and the community on a whole.
Registering as an organ and tissue donor shows an individual’s compassion for others, and can change lives forever.
You too can save lives. In honor of Pope Francis’s visit to the United States this September, register as an organ and tissue donor today
Strong words, from our Pope.