I knew that Kayla was being considered for a transplant but now it is certain! Kayla will be listed on the transplant list tomorrow and Eve will once again go through the ordeal of having a child go through this process! Please keep them in your prayers & below is an email update from Eve. Also, WSB and Children's Healthcare of Atlanta asked Liberty & Kayla to be a part of their fundraising campaign....Kayla's transplant will be documented by WSB the entire process!!

Ok here’s the scoop:

Children’s Healthcare of Atlanta and WSB have asked Kayla and Liberty to be part of their annual fundraising campaign. They were out here at out house on July 9th and interviewed both of the girls and myself. I will have the dates and times for the broadcast as soon as it is available. Kayla’s entire process through this transplant is being documented. They will be filming her while she is at the hospital from the time we arrive through the surgery and through recovery. They are talking to Liberty about what it has been like this past year and July 9th was her 1yr anniversary.

July 14th we received a call from Jill the transplant team nurse coordinator at Egleston. The call came at 2:45 pm. Kayla’s insurance has approved her transplant and we will be going into the hospital for an emergency appointment at 2pm on July 16th for Kayla to be re blood typed and for our final conversation with the surgeon Dr. Thomas Heffron. She will be listed on the 16th and we will receive the pager so they can reach us as soon as a liver has been found. I swear my heart was racing a million miles a second and I had to hold back the tears. This all came while Kayla was practicing with her schools Color Guard team and I was sitting there with other parents watching their kids practice. So instead of sitting there talking about competitions and the kids progress I was trying to find a way to let her coaches and director know in a discrete way. And I was trying to secure a spot for Kayla on the team after she recovers. I know it may seem like I should be able to handle this better but in reality it is very frightening. I know this is what we have waited on all of her life but that doesn’t make it any easier. And although Liberty went through this a little over a year ago it really doesn’t make it easier it actually makes it harder because when she had her transplant everything was so surreal and I didn’t know what was to come. Now I know what we are going to have to overcome to make her well and it had me shaking like a leaf.

Kayla & Liberty's Mom

Per email for Eve in May:

Here’s the latest with Liberty.

She is doing great and feels better than she ever has. Liberty’s energy level is incredible; she is always moving and can’t seem to stay still. She is getting straight A’s in school and has had no problem catching up with her class. Her current lowest grade is a 97 in math. She hates math. She went on a field trip with school for 3 days and did wonderful. Liberty has learned that she has to be responsible for taking her meds and I can count on one hand the # of times I have had to remind her to take them. She is growing and is now about 4’5 ˝ . We have had a few problems with insurance paying for her meds so that has been a bit of a struggle but I can’t complain. We haven’t had to go to clinic for over 2 months now and her labs are now only once a month. Which is awesome if I do say so myself!!

The latest with Kayla,

We are waiting on the insurance to ok the testing that she needs to have done prior to being eligible for a transplant.

Per Email from Liberty's mom, Eve, on March 27th Liberty's sister Kayla will be meeting with a tranplant team to determine her need/eligibility for a liver transplant. Below is an email from Eve:

Well today’s the day Kayla goes in to meet the transplant team. Seems like I just did this with Liberty. Oh wait I did just do it with Liberty about a yr and a half ago. Well, back on the roller coaster. (I hate roller coasters btw) I hope the appointment goes well. Kayla needs to do this so she can understand what all it takes to go through a transplant and so we can make an informed decision for her. I have to say I am not sure I am ready for this at all. I almost lost Libby last July and I really don’t ever want to go through that again. But we will think positive. Libby was the first liver transplant for GSD done here so maybe when Kayla goes in they will know more about what to look for. On a more positive note... If Kayla recovers as well as her sister did she is going to feel better than she has her entire LIFE!! And that in itself makes it worth it!!!!

On March 2, 2008, Karla completed the LA Marathon to benifit GiveLibertyLife.com! She ran the full 26 miles in 8 hours and 20 minutes. Liberty continues to do well & look for more updates regarding her recovery as well as pictures!! Below is a copy of an email received from Karla after finishing her marathon:

I completed the LA Marathon yesterday in 8 hours and 20 minutes!!! It was the most exhilarating, exhausting and rewarding experience of my life!! I have to admit, my feet HURT like never before, but it was all worth it :) And I have shiny new medal and memories I will never forget.

Most importantly, I would like to thank each and every one of you who took the time and money to pledge for this worthy cause. Thanks to you all, we raised almost $900 to help Liberty my niece and her family pay for ongoing medical expenses due to her liver transplant, which saved her life! And we continue to save her life by helping to support her family to afford the medical costs that help her stay alive!! You all are marvelous and I love you all :) You have beautiful hearts and every time you give, I believe.... It will come back two fold!!

I would like to thank each and every one of you personally. Please email me your address so I can keep you updated on Liberty's condition and send you a special token of our appreciation. Also, if you pledged money and you don't see your name on the sponsor list and would like to be on it, please email me and I will be sure to get you on the list. If there is any one you know who donated and I did not add them to this email list, please let me know so that I can acknowledge there generosity as well.

Liberty continues to inspire me by her strength and will to live this life fully. You continue to inspire me by your generosity and wonderful hearts. And life continues to amaze and inspire me. There is so much out there and I feel I have only skimmed the surface....

Thank you again,

Karla Urbina

A big thank you to all who donated financial/emotional support to Liberty & her family!!!

Per an email received on 2/19/2008:

Hello all,

Hope all is well. I'm running the LA Marathon March 2nd. I'm a bit scared and very excited!! There are two main reasons i'm doing such a crazy thing... 1) I've always wanted to :) 2) I'm raising money for my niece Liberty. This past May Libery underwent a liver transplant due to having GSD (Glycogen Storage Disorder).

Liberty is doing well in her recovery, which swells my heart!!! The insurance basically covered the procedure, but barley the recovery. The medication she needs to take is very expensive so this is the least I can do for my beautiful niece! All i'm asking is if you can donate a dollar a mile. If you are interested in donating you can go to www.giveliberylife.com At the bottom of the page just click on Marathon Pledge to donate.

Liberty, my family and I appreciate your support more than you know.

Much Love and Many Thanks,

Karla

You can make your pledge by clicking here! Thank you!!

Per an email from Liberty's grandmother.....

Hello all,

As most of you know, my granddaughter, Liberty Urbina recently underwent a liver transplant to save her life. She and her sister Kayla are both afflicted with Glycogen Storage Disease diagnosed as babies. Kayla has been fortunate in that she has been able to maintain her health with out the need for radical medical intervention; Liberty was not so lucky. However due to the wonders of science, she received a liver transplant this summer which saved her 13 year old life thanks to her insurance coverage and the generosity of many many people who have donated time, talents, and money.

In September, Dave Foley held a benefit concert at Safari Sam’s in Hollywood raising over $2,600 for the Give Liberty Life Fund.He used the 1st reunion of his group to draw as many people as possible and performed for over 2 hours to help save the life and to support a little girl he had never met!

A group of young campers at Summer’s Camp Ground outside of Pine Village Indiana spent their camp days making individual cards for a little girl they had only heard about! Her Mom’s co-workers gave vacation and overtime hours to keep the income going! The Atlanta Braves sent two of their top guns to cheer Liberty on after she suffered a set back and had a 2nd surgery! Nurses hovered, her Mom stayed 24/7, church groups prayed! We thank them all because Liberty’s Life is our most wonderful gift this Christmas Season

Coming up is a 26 mile Marathon. Her aunt is in training and will be running this marathon with the goal of getting as many sponsors as possible to sponsor her at $1.00 for every mile she completes with all the proceeds going to the Give Liberty Life fund. Anyone who wishes to be a sponsor , including groups and companies , can register by completing the pledge form which can be accessed by clicking here.

Donations are more important than ever. The company that employed Liberty’s mother was caught in the Real Estate downturn and Evelyn was laid off in November. The on going costs of anti-rejection medications, constant medical tests, and more go on. However, the Give Liberty Life fund is not just about Liberty; the goal is for this fund to go on to help other families who are faced with the staggering costs associated with saving a child’s life with a Liver Transplant.

Please sign up whether it’s to sponsor 1 mile, 5 miles, or all 26 miles. Every mile Liberty’s Aunt runs is another mile towards giving Liberty Life!

Thanks in advance and thank you all for all of your love and support this past year.

Pat Eller

For those who are not aware of this....Liberty's mother was recently laid off since her company was affected by the huge turn down in the real estate market. Liberty's mother still keeps a positive mind & is so thankful her daughter is doing so well. Liberty's mother is still facing medical bills and the continuing cost of medication that isn't covered. Please keep those donations coming...Liberty still needs YOU!

An email from Liberty's mother...

Liberty is doing well. She started back to school November 5th. But got sick that first week and had to be hospitalized that Friday thru the next Monday. We think it may have been a bout of rejection and her meds have all been increased. She has to drink 96 oz of water while she is at school during the day and that has been a struggle but to keep her meds from causing kidney or other organ damage she has to drink all of the time. She is loving being at school she really missed her friends. She is a little behind in a couple of classes but the teachers are trying to help her as much as they can. Halloween she spent the night at her friends house (I know them well and they were able to really watch her and make sure she was ok) she had a blast. Since then she has had some friends sleep over and she spent the weekend after thanksgiving with her grandparents and extended family. Liberty knows how important her meds are and she has even set alarms on her cell phone to remind her to take her meds. She rides her bike everyday and loves to be outside. We still have to have labs drawn every week. I am sure that will be the case for a while. She eats all of the time now and is growing, and gaining weight which is really exciting. We have to be careful cause one of her meds is a steroid and she could easily gain too much weight.

Libby loves and hates her new tummy. She still doesn’t have all of her feeling back there and she really doesn’t like her scar. She said that the dr needs to learn how to sew a straight line.

Thank you to all those who coordinated the benefit concert in LA. It raised $2,646 for the Liberty Urbina Medical Fund but more is needed so anything you can donate or if you have a fund raising idea please contact us on the contact page or go to the donate page to learn how you can help!

Liberty has now been out of the hospital for a month & here is an update from Liberty's mother.

She is feeling much better and is nearly back to her old self, which seemed to happen overnight. We are waiting for the results from her CAT scan that they did on Friday. We really feel good about it since we haven’t heard back from the doctor about it yet. Libby still has problems with back pain & I am hoping that the back pain is not her kidneys but that’s the general area where she hurts. Some of these meds are really bad for Libby’s kidneys and could cause major damage. Libby is still on fluids at night just because it’s hard for her to drink as much water as she needs to to keep her kidneys flushed. We have been through some scarry stuff in the past 2 weeks. Libby’s bloodwork 2 weeks ago came back CMV positive. CMV is a virus that most of us have been exposed to and still carry. It has very little is any ill effects in a person with a healthy immune system but is very dangerous for some one with a weak immune system. Libby was on iv antibiotics for a while. Luckily she has now had 2 CMV tests come back negative so she is off those antibiotics. She was having a lot of stomach pain. Several times a day she would curl up in a ball with a blanket and her heating pad to relieve the pain. And there were many nights she woke crying because of the pain. Mysteriously the pain just stopped in the middle of last week and she has felt tons better.

Not much else to say but LIBERTY IS GETTING DISCHARGED!!!! She should be discharged later this evening! Check back for more information tomorrow!

The doctors are planning on removing Liberty's staples & she may get a 6 hour weekend pass. Things are going very well & Liberty has been asking for steak to eat! She may even be discharged next week!

This testifies to this young ladies spirit. In 2 days she will be in the hospital for 1 month. She is in pain and her poor little body has been through so much. And yet...... She suprises her mother and sister with a birthday celebration!! She even arranged for a sugar free birthday cake for her sister since she cannot have any sugar due to GSD. She amazes me still--such a beautiful spirit!!

This week has proven to be a good week. Liberty is getting up and around more. On Monday she spent the best part of the day out of her room & walks to her therapy. Liberty has been on an NPO (nothing by mouth) order since Sunday. This has been lifted and Liberty will receive some chicken broth today. Her NG tube is out again.

Liberty is still having issues with blood sugars. She is now on Lantus which is a long lasting insulin shot. She has a number of things against her right now that makes it hard. She is still using TPN which is very high in sugar. The anti-biotics & anti-rejection medication also make it difficult for her body to regulate her blood sugars.

Friday though some bumps were noticed on her skin and by Saturday they were worse and she started getting sick. This continued until early Sunday. Blood tests are being conducted to rule out some causes one of them being CMV. CMV is a virus that a majority of the population have but aren't affected due to their immune systems. Liberty's immune system is being supressed to help prevent her new liver from being rejected. This puts her at a greater risk of aquiring this virus full force. We will have to wait and see what the results of her labs are.

Sunday night Liberty was moved out of ICU to a regular room! Her oxygen levels are good now & her new liver is doing well. She is having issues with her sugar levels. They were running high & then when the IV feeding was stopped her sugars bottomed out. Liberty's been doing physical & occupational therapy & is up and about. She had a rough night last night & will be having tests done today to ensure she doesn't have another stomach perforation.

Liberty is progressing and the doctors are pleased with her progress. She remains in ICU. Friday night they tried to take her off oxygen but that affected her breathing so she placed back on it again. She periodically receives insulin drip to maintain her blood sugars but she is doing fine and her new liver is doing well.

Liberty is doing well. She is still on the insulin drip. She is getting out of bed but she is having a very difficult time getting comfortable. They are trying to wean her off the morphine which isn't helping her be comfortable.

Liberty was taken off of the ventilator today & her liver appears to be doing great! Yestarday, the Atlanta Braves were visiting CHOA & Liberty received a visit from one of the Braves!! Unfortunately, Liberty was sleeping when the Braves player came to visit!!

Liberty is fighting the infection & her new liver appears to be doing well. Her sugars are on the high side and an insulin drip was started. She is still on a vent but keeps signaling she wants it out. Liberty is being kept sedated due to being on the vent but when she does wake, she is ready to write down her list of demands. Her spirits seem good & more importantly her will and determination to get better.

Liberty remains in ICU after her emergency surgery yesterday. She now has an bacterial infection partly due to the stomach contents that spilled into her abdominal cavity yesterday. This is always a risk that happens when this type of thing occurs. She is on antibiotics to fight this infection. She is back on a ventilator, catheter, & NG tube. She was awake at small intervals & signaled that she wanted her breathing tube removed but unfortunately that can't happen yet. It is good to see her will strong and this will help carry her through these hard times.

Today was a rough day for the family. Liberty had a good evening and seemed to be doing well today. She was sitting up in her bed eating some cereal when she had an excruciating pain in her stomach. According to her family, she screamed out in pain. After some tests, the doctors rushed her into emergency surgery. Liberty had a small tear in her stomach which was repaired. She handled the surgery well & is recovering. Please, if you can help click here.

Liberty had a rough day yesterday but is doing a little better today. She is just in a lot of pain. She is getting up now to use the restroom since the cath has been removed. The NG tube has been removed as well. Things are progressing & her labs improve everyday. The pain is hard for Liberty. She is breathing very shallow which is creating issues with her oxygen levels in her blood. The doctors are monitoring this but don't seem overly concerned. They are very happy with Liberty's progress! Keep her in your prayers!

July 11, 2007: LIBERTY IS DOING GREAT! DOCTORS ARE VERY OPTIMISTIC.
New web page to be completed soon to better track Liberty's progress & recovery!

Liberty is doing great today. She was more lucid and aware of her surroundings. Last night was a little rough. She was in pain & could not get comfortable. There was some concern over her blood pressure & heart rate. Today though everything calmed down & there is no longer concern about her blood pressure or heart rate. Her labs are normalizing including some labs that were never normal! This is great news! The doctors are very optimistic and with her current path she will more than likely leave ICU within the next few days!! Please keep her in your prayers! As always, if you can help click here. All the funds go to aide Liberty!

Soon, there will be a new page to keep track of Liberty's progress including some recent pictures. Stay Tuned!

At around 11:30 today Liberty was taken off her ventilator & was awake. Her first words after having this major surgery was "Tell my sister Happy Birthday!"!! Being taken off her ventilator is a major step for Liberty. Her doctors are very optimistic and everything is going well! Keep Liberty in your prayers for a speedy recovery! We still need your help, if you can donate anything click here. All the funds go to aide Liberty & help pay for medical related expenses.

At around 4:30PM Liberty's transplant surgery was complete! The doctor's said it went very well & she is now in ICU. Stay posted & we will keep you posted on Liberty's recovery! Also new, Discovery Toys joins us in raising funds for Liberty! Click on Donate at the top of the page to learn how you can buy toys & help Liberty at the same time!!

A possible donor match was found! Yesterday Liberty went into the hospital to confirm the match yesterday late afternoon. If the liver is a perfect match, she would probably have the surgery between 2AM & 3AM. Check back often to hear about her progress!

Liberty's mother receives news that Liberty is back on the donor list. The doctor is feeling better!! Liberty will be doing some lab tests today. As always, please send your support to Liberty!

Liberty is removed from the donor list due to the surgeon being ill. They couldn't give an estimate as to when Liberty will be placed back on the list. This is a major let down! Please send your comments of support & prayers to Liberty's family by clicking here. Please show her some support! Come back to learn more!

Liberty was called in for a doctor's visit. Blood work was completed & formally placed on donor list. Family was given the pager used to notify them if a liver is available. Told to be on standby since a liver could be available anytime. Family went shopping in preparation for the possibility of a hospital visit.

Liberty is taken to Children's Healthcare Urgent Care Clinic due to severe stomach pain. From here she was sent to the emergency room where she given fluids. The pain was being caused by lower right quadrant of her liver but were unable to determine the reason for the pain even after CAT scan & X-Rays. Liberty was discharged after 6 hours with pain medicine. She is home now and seems to be feeling better. This was a big scare to the family since no one could tell them why and of course they are worried about whether or not this will happen again.

Liberty receives final approval from Peach State Health Plans. This is a huge relief for her family & Liberty can FINALLY be placed on the transplant list and wait for a transplant. She will be placed on the donor list as a status 1 on June 18, 2007. Now we just need to raise funds for everything else afterwards. To read more about the cost click here.

Attorney Marc Celello agrees to assist in the incorporation of the non-profit organization Liberty Assistance Fund for Transplant Recipients. An organization born from Liberty's struggle. This organization will help other families in the same situation as Liberty's.

A concert will be held in Liberty's honor on September 22, 2007 in Los Angelos, CA. Check back frequently for date and location!

A possible golf tournament maybe held to honor Liberty. Check back for more information.