This was written by me about a month ago for the YES UTAH blog:
My little LuLu (aka London ) received the gift of life for a second time on January 15th 2010. Unknown to us, London was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency. It is a disease that causes scarring to the liver and lungs. We knew by the time she was 7 months old she would need a liver transplant by, if not before, her 2nd birthday. It turned out to be much sooner rather than later.
The race was on to find a liver, through LIVING Donation Screening, as there is a major lack of organs available vs. NEED to allocate through the United Network of Organ Sharing (UNOS). Children and adults die waiting for their much needed organ to be gifted to them. London was listed on UNOS but we proactively starting the screening with myself (Mum), to no avail. I was not a good match for my baby. I wanted to fix her, to make her suffering stop, to save her life–but I was told I wouldn’t be able to.
Her Daddy was next but his liver was too big for her wee 11 month old body. LuLu’s Aunt Cydnee volunteered but her liver wasn’t right for LuLu either. Simultaneously LuLu’s Uncle Jordan was being tested as well…. London became very critical in December of 2009 and her status on the UNOS list went to top priority. We were all praying for a Christmas miracle. It didn’t happen on Christmas Day like Doctors hoped for her, but weeks later the miracle came. It was like a second birth for her.
Out of a tragedy life was given to 5 others, Lulu being one of them. Ashley Maynard was struck by a car on January 8th and kept on life support until she lost all brain activity. Her selfless parents donated all viable organs to strangers in need. London being the youngest at 14 months and someone in their 70’s the eldest of the group. They said they knew it was what Ashley would have wanted. What a beautiful connection my London will forever have to Ashley and her family. Our gratitude is never ending.
I would bring Ashley back if I could, but since I can’t, we honor her daily. Myself, by being a better person and a better Mum to my two children. London will grow up knowing why she has a big scar on her belly and the sacrifice had that enabled her to live. She will live a life worthy of wearing her beautiful scar. We value each day like it could be our last. When our last days shall come for me or anyone in my family we will all be donors if God will allow.
In the last month since we’ve been home from Primary Children’s Hospital London has started eating and stopped vomiting. She started crawling days within leaving the hospital and took her first steps just last night. She is beautiful from the inside out, very happy & healthy- ready to lead a normal life. She is a new baby, has blossomed before my very eyes.
Our deepest THANKS to Ashley’s family and anyone who checks Yes on their driver license. Heaven doesn’t want our organs…leave them behind for those that do.
xoxo,
Lizzie
A very blessed Alpha-1, Liver Mum
My little LuLu (aka London ) received the gift of life for a second time on January 15th 2010. Unknown to us, London was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency. It is a disease that causes scarring to the liver and lungs. We knew by the time she was 7 months old she would need a liver transplant by, if not before, her 2nd birthday. It turned out to be much sooner rather than later.
The race was on to find a liver, through LIVING Donation Screening, as there is a major lack of organs available vs. NEED to allocate through the United Network of Organ Sharing (UNOS). Children and adults die waiting for their much needed organ to be gifted to them. London was listed on UNOS but we proactively starting the screening with myself (Mum), to no avail. I was not a good match for my baby. I wanted to fix her, to make her suffering stop, to save her life–but I was told I wouldn’t be able to.
Her Daddy was next but his liver was too big for her wee 11 month old body. LuLu’s Aunt Cydnee volunteered but her liver wasn’t right for LuLu either. Simultaneously LuLu’s Uncle Jordan was being tested as well…. London became very critical in December of 2009 and her status on the UNOS list went to top priority. We were all praying for a Christmas miracle. It didn’t happen on Christmas Day like Doctors hoped for her, but weeks later the miracle came. It was like a second birth for her.
Out of a tragedy life was given to 5 others, Lulu being one of them. Ashley Maynard was struck by a car on January 8th and kept on life support until she lost all brain activity. Her selfless parents donated all viable organs to strangers in need. London being the youngest at 14 months and someone in their 70’s the eldest of the group. They said they knew it was what Ashley would have wanted. What a beautiful connection my London will forever have to Ashley and her family. Our gratitude is never ending.
I would bring Ashley back if I could, but since I can’t, we honor her daily. Myself, by being a better person and a better Mum to my two children. London will grow up knowing why she has a big scar on her belly and the sacrifice had that enabled her to live. She will live a life worthy of wearing her beautiful scar. We value each day like it could be our last. When our last days shall come for me or anyone in my family we will all be donors if God will allow.
In the last month since we’ve been home from Primary Children’s Hospital London has started eating and stopped vomiting. She started crawling days within leaving the hospital and took her first steps just last night. She is beautiful from the inside out, very happy & healthy- ready to lead a normal life. She is a new baby, has blossomed before my very eyes.
Our deepest THANKS to Ashley’s family and anyone who checks Yes on their driver license. Heaven doesn’t want our organs…leave them behind for those that do.
xoxo,
Lizzie
A very blessed Alpha-1, Liver Mum
3 comments:
Hi Lizzie :) Your posts are always so heart warming my dear and the stories of Ashley and LuLu never ceases to bring tears to my eyes. I love the pictures below of Ashley's Mum w/your precious little one. Your family's relationship with Ashley's family is truly a match that was made in Heaven, and I thank God for allowing you all to meet! My Driver's License is marked :) God's Speed!
This is Raleigh Lund's wife. I have followed your little Lulu's story since she came to my attention. This is the most wonderful post and wonderful news. I am so filled with joy. It would seem she is in a mighty hurry to get caught up in her developmental accomplishments. Which speaks volumes to her strong spirit that you already knew she had. What a remarkable little girl she is.
You and your Lovely LuLu inspire me! My cup runneth over!
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