Liver for LuLu: Ashley's Gift: A Liver For LuLu (Posted by Aunt Julia)

Friday, February 12, 2010

Ashley's Gift: A Liver For LuLu (Posted by Aunt Julia)

LuLu was front page news on Valentines. We are very proud of her and her hard work to overcome a year of illness. Love that our stories came together. We are forever in debt to Ashley and her family. xoxo Lizzie, Alpha-1, Liver MuM. 2-14-10

What a fun surprise to see LuLu's Salt Lake Tribune article online today! We were told it would make it's debut on Sunday morning, but to generate interest for the Sunday paper, they released the online version today. Lizzie asked that I post the article link on LuLu's blog. She doesn't want to see it until Sunday morning. Seeing the hard copy in ink will make Valentines Day complete for Lizzie and James.

For those of you (like ME!!) who just can't wait...

http://www.sltrib.com/news/ci_14390307

I'm sure you'll agree that Heather May wrote a fantastic article. Big props to her and the photographer, Steve Griffin. Our families and friends really enjoyed the time we spent with them as they pieced the article together over the last few months.

I am so thrilled that this article is about Angel Ashley and LuLu together. They are liver sisters, and I think their moms would agree, soul sisters, too.

Enjoy!

xoxoxo

Julia

2-12-10

18 comments:

Jadie said...: Liz and James are in for it Valentines morning!!! What an amazing story. Thanks for sharing it!
Jadie Banks
West Jordan, UT; February 12, 2010 at 8:01 PM
Megan said...: What a great article they wrote! So happy & sad, all at the same time. I remember when Liz posted that they were going to write this article about LuLu... had no idea at the time that they would also include her donor, Ashley. So glad they did, though. Ashley is such a beautiful and precious angel. My heart breaks for her loving family, but rejoices for the gift she's given LuLu.; February 12, 2010 at 9:48 PM
Nicole S. said...: What a beautiful story!!; February 12, 2010 at 10:05 PM
A womb for rent said...: Amazing I have tears rolling off my face!!!!! Amazing!!!!; February 12, 2010 at 10:07 PM
TPoirot said...: OH what an amazing journey! this will be a special Valentines day for Lizzy & James...so glad GOD brings lives together through tragedy and shows us his grace & love! Special people involved in EVERY area of this story! Ashley's mom is heavenly & brave...xoxo; February 13, 2010 at 7:51 AM
Mama Williams said...: A well written story! I feel privledged to know both sides of the story now. Miracles DO happen! Happy Valentine's Day to Liz & James & LuLu and all the family. Thank you for allowing me to be a part of it...to learn..grow...understand more right along with you. xoxo; February 13, 2010 at 8:22 AM
Erica said...: Wow what an amazing story about two very special girls.; February 13, 2010 at 9:06 PM
Carrie and Nathan said...: Thanks for posting the link Julia. Beautiful, beautiful story.; February 13, 2010 at 10:02 PM
Jamie said...: Liz...I just read the beautiful story in the Tribune. I was so touched!!! Thank you so much for sharing this story, I know it will help others going through similar trials!
Love,
Jamie Dickson; February 14, 2010 at 8:54 AM
LeeAnn said...: Beautiful and tender article. Author very sensitive. Very tearful reading, just like the blog.; February 14, 2010 at 1:27 PM
Stephanie said...: Liz, I read your story in the Tribune. It really touched me. Thank you for reminding me to count my blessings. You and your family are great examples to so many.
I'm happy for you and LuLu. Congratulations! You are in my thoughts and prayers.
Happy Valentine's Day!
Stephanie Tye Rollins; February 14, 2010 at 9:43 PM
Anonymous said...: Great story! You can now add Azerbaijan to your list of greeters! I'm from the US living in Baku while my husband is working here.; February 14, 2010 at 11:10 PM
Vic, Linds, and the girls... said...: I read this article the other day and cried like a baby. I then made Vic go buy the newspaper so i could read it again. And I cried even harder the second time. What a great article. It was neat being able to read about Ashley and the second chance she gave little London. I have been making everyone read it along with Taylin who had tears in her eyes as i read it to her.. What a touching story, and lesson for everyone to be a Organ Donor. You are always in our prayers.
xo; February 14, 2010 at 11:19 PM
Annie said...: What a beautiful article. Captures all the lovely people involved. What a treasure. xoxo; February 15, 2010 at 8:05 PM
Anonymous said...: Liz that was such an amazing article!! I loved how it portrayed both sides of the girls, they did a great job. Brad and I sat there and cried together as we read it. At one point he said to me "This is too much" he is your typical guy who doesn't so much emoition and for him to say that I know it really touched him. We had all of our family read the article and they called us in aww of your family and what a trial and blessing you all went through. I hope you and your sweet family had a wonderful Valentines day. Brad and I would like to get together with you and James and maybe go to dinner so we could talk in person and get to know each other a little better. Let me know what you think and we can talk on the phone.
Love
Kayli; February 16, 2010 at 9:27 AM
Something Happened Somewhere Turning said...: A friend forwarded this story to me and I cried while reading it. Very touching and beautifully done by the Tribune. What a journey for such a tiny little girl.
I hope that all of you are doing better these days after such a long ordeal.
I tried to leave a comment on the SLTribune but the registration kept erroring out, so I clicked on the the blog link.
Be well...and thanks for sharing this experience.; February 16, 2010 at 9:31 AM
Niki said...: What a great article! Such an amazing story of two amazing families!; February 16, 2010 at 1:29 PM
Jo Lynn said...: Can't wait to read it!; February 17, 2010 at 3:28 PM

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Welcome to liverforlulu.blogspot

Meet beautiful, brave, tough-as-nails London (aka "LuLu"). She's been fighting Alpha 1 Anitrypsin Deficiency since birth. It's a genetic disease that causes liver disease and sometimes lung disease later in life. She received a new, clean, healthy, pink, perfect, beautiful liver January 15th 2010 thanks to the generocity of a family willing to donate their childs organs to give life to others. She is LuLu's Angel. We thank every person who takes the time to look at LuLu's blog. I am so happy that many now know what Alpha-1 is. I am grateful that some may change their veiws on organ donation because of London's life that she's been living with such dignity, strength and grace. Feel free to email me, elizabethbarnum(at)hotmail(dot)com with questions or comments.

What is Alpha-1?

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes.This condition may result in serious lung and/or liver disease at various ages in life. For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes. One defective gene came from their mother and one from their father.There are many types of defective alpha-1 antitrypsin genes. The most common abnormal genes are called S and Z. Normal genes are called M. A person who does not have Alpha-1 will have two M genes (MM). People identified with Alpha-1 most commonly have two Z genes (ZZ). Current evidence suggests that there are about 100,000 people with Alpha-1 (ZZ) in the United States. Another deficient gene combination is SZ, although people with this gene combination are less likely to get lung or liver problems than those with two Z genes. (lulu is ZZ)

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

The most common signs and symptoms of disease caused by Alpha-1 are: Shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis) reacurring chest colds, eyes and skin turning yellow (jaundice), swelling of the abdomen (ascites) or legs, vomiting blood (from enlarged veins in the esophagus or stomach) decreased exercise tolerance, non-responsive asthma or year-round allergies, unexplained liver problems or elevated liver enzymes and bronchiectasis.

Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1. Individuals with Alpha-1 may remain healthy throughout their lives. Early diagnosis and avoidance of risk factors such as cigarette smoking, can help prevent Alpha-1 from causing disease. An estimated 20 million people have one normal and one defective AAT gene. People with one normal gene and one defective gene (for example MZ) are called “carriers”. (james and liz) Carriers may pass the defective gene on to their children. Alpha-1 can lead to lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure. Alpha-1 is the most common known risk factor for emphysema and COPD. About 3% of all people diagnosed with COPD may have undetected Alpha-1. Alpha-1 can lead to liver disease. The most serious liver diseases are cirrhosis and liver cancer. The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.

What does YOUR liver do for you?

How important is the liver?
The liver is a vital organ. Without it we would not be able to live. Apart from the brain, it is the most complex organ in the body. It has a wide range of functions and acts very much like a factory. One of its most amazing features is its regenerative power. Some 9/10ths of the liver can be cut away and provided the remaining 1/10th is healthy, the liver will grow back to its original size.

The liver is a processor
The food that we eat passes into the stomach via the esophagus (gullet). The food is broken down by the action of the stomach and the small intestine. The nutrients from the food are then absorbed into the blood via the vessels in the walls of the intestines. These drain to veins which lead into the portal vein which carries the blood into the liver. The nutrients are processed in many different ways in the liver. This processing of the food is known as metabolism. The final products made are used by the body for energy and growth.

The liver is a manufacturer
The liver produces a number of different substances which are vital in order for healthy growth and development. For example: 1. The liver cells produce substances which assist with the clotting of the blood, e.g.Prothrombin. 2. The liver cells make proteins which are carried in the blood. These have many functions. Albumin, for example, helps to control the distribution of fluid in all parts of the body and transports many substances to and from the liver and kidneys to other parts of the body.

The liver is a storage depot
The liver stores energy in the form of glycogen (sugar). It also stores a number of other substances, e.g. copper, iron and vitamins.

The liver is a controller
The liver plays an important part in controlling: 1. The correct level of many hormones within the body. 2. The blood sugar (glucose) levels. The liver stores glucose in the form of glycogen when there is too much glucose in the blood and releases it when the blood sugar level falls. 3. The amount of fluid the body retains and its distribution throughout the body. 4. The concentration of cholesterol which it converts into bile salts. 5. The action of many drugs

The liver is a filter
The liver removes many unwanted substances from the body. It plays an important role in controlling the harmful effects of some drugs and products of metabolism by changing them chemically before excreting them into the bile. Bilirubin (unconjugated or indirect) is produced when old red blood cells break down. The average life of a healthy red blood cell is 120 days. This bilirubin is carried in the blood stream, attached to albuimin, to the liver where it is altered into a different form (conjugated or direct bilirubin) which is then: 1. Excreted in the bile. 2. Transferred into the bile which passes via the bile ducts into the intestine and appears as brown pigment in the stool. Bile is continuously produced by the liver cells mainly by the action of bile salts. It collects in and passes out through the network of bile ducts into the intestine. Bile salts play an important role in the digestion of fats.

The liver is a defender
The liver plays an important role in fighting many types of infection. In particular, protects the body against infection which arises in the gut. With so many different and complex functions, it is not surprising that more than 100 types of liver diseases have been identified in babies and children.

Liver for LuLu

Friday, February 12, 2010

Ashley's Gift: A Liver For LuLu (Posted by Aunt Julia)

18 comments:

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