Liver for LuLu: The Most Beautiful Tree

Sunday, December 6, 2009

The Most Beautiful Tree

Kath, Tay, Will, Me & buddy

Kathryn, Taylor and Bronson...a dear friend of theirs that passed away several months ago. Kathryn and Adam granted his "Make a Wish" which was to go on a hunting trip. His entire family and friends got to go camping and he got a kill, which he is pictured with. He was a great boy that really touched the Fentons life.

Me, Mommy & Lulu

LuLu's Tree

Lulu-having her own tea party, looks like part of the scenery

April, an ANGEL in our life

Dear sissy Cydnee

The festival was amazing. Every tree having it's own story. Whether it be a sick child like mine who is fighting a good fight or in memory of a sweet angel that has passed on to be with our Father in Heaven. It was a sacred and humbling day for me, to walk up and down the isles and see all the beautiful trees, my heart heavy for every child & family being represented.

If you know someone who has lost a child- don't forget about them. Remember their birthdays, talk about them. Mom's who've lost their babies think about them all day every day and want to know that other people think of them too. If I were to lose London, (which we wont, but it was a thought of mine at one time) it would break into me pieces to think of her being forgotten by others.

When we found Lulu's tree I was surprised to see that it had been purchased by "Nana and Papa" and it is now residing in our family room. Thank you Bri and Cindy, what an amazing, generous gift. I will look at it all day long. It has filled me with hope and love. I can see that many, many hours were put into decorating and designing it. It is so lovely- so Lulu. It is adorned with hand made ornaments and the skirt is made of a dozen aprons that I'll share with the most special women in my life after the season is over. This tree makes me so happy.

I can't wait to meet the women and girls that created the most beautiful tree I have ever seen. Thank you Holladay 3rd Ward Activity Girls and leaders, you have touched our lives. See you on the 18th! James and I are VERY excited to participate in the Festival of Trees next year in honor of someone else.

11 comments:

Andrea Coles said...: Went to the festival the other day, saw Lulu's tree. It was so beautiful and we were so proud to be able to support Primary Childrens and all the children that benefit from their care. Seeing all the children that are sick or passed on was difficult and I almost cried more than a few times.

Just wanted to let you know that we love you guys so much and are so proud to count you as friends. We wish you all the best!; December 6, 2009 at 6:04 PM
McCall said...: You have the BEST in-laws ever! They are so wonderful!; December 6, 2009 at 9:23 PM
Brock and Lisa McKeown said...: How fun, that's so cool to also have the tree in your home!!!!; December 6, 2009 at 10:38 PM
Sarah Lemn said...: You have such a wonderful family and church support system! We are praying lots that LuLu gains weight and that God helps prepare her body, James, you and the rest of your family for transplant! Praying that you won't have to spend Christmas in the hospital and you can enjoy your new tree from the comfort of your home on Christmas morning!; December 7, 2009 at 5:59 AM
Sam and Jess said...: I saw Lulu's tree...it was so cute!!; December 7, 2009 at 3:21 PM
Amanda said...: Oh Liz, that is so amazing that you guys have her tree!! It is soo cute and you all look great! Hope she is doing good and better!! When Britt passed away we did a tree in memory of her for the festival of tree's and it stayed in our family!! And me and Taras have it! We are soo lucky!! It's so nice to put it up and look at it all the time and think of her! I wish I could leave it up all year!! I'm so glad you have Lulu's!! That's great!! All the best....amanda; December 7, 2009 at 6:41 PM
allieb said...: oh, her tree is darling! i love going to the festival of trees and wanted to go see it but never made it because kaia has been sick. i will have to come over and see it! loves; December 7, 2009 at 8:50 PM
Jo Lynn said...: Absolutley beautiful!!! I so wish I could have been there and I'm so happy that tree is in your family so you can see it always. Thank you for this amazing post, it only reminded me of how more stories need to be shared about my loved ones who have passed and tears welt up in my eyes thinking of these little angels passing onto to be with their Heavenly Father! I was so thankful to participate in the fast for Lulu and know He hears and answers our prayers! Much Love,
Jo Lynn; December 8, 2009 at 10:20 PM
Jamie said...: How sweet that Nana and Papa bought the tree. And so happy to see that little Lulu was able to make it to the festival to see her tree up close and personal. You and your family are beautiful.; December 9, 2009 at 7:43 PM
Cydnee said...: Lulu looked like a sweet doll under the tree. She IS a gift to all of us.; December 10, 2009 at 6:36 PM
Tara said...: What an incredible tree! What an incredible family. I love you guys!; December 11, 2009 at 9:15 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

Sunday, December 6, 2009

The Most Beautiful Tree

11 comments:

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