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Our Current Donation: Arlaya’s Liver Transplant and Recovery
Who is Arlaya
Arlaya is a 7-month-old baby that has a rare liver disease called Biliary Atresia. This disease is a blockage of her bile ducts causing severe damage and loss of function in the liver. She underwent a procedure to prolong the functioning of her liver, but this was unsuccessful.
Arlaya was born on 7/13/21 at 5lbs 14oz. Brian and I were beyond grateful to have the most beautiful baby girl. The day of getting discharged, we were informed that her newborn screening had slightly elevated levels of bilirubin which is a sign of jaundice. The following day, we went to her newborn appointment where her pediatrician wanted us to complete another newborn screening as a precaution. This second screening showed a slightly higher level of bilirubin and referred us to a Gastroenterologist (GI) specialist at Children’s Hospital. Once we met with the GI team, the first step was doing a full lab draw to get a panel of her liver levels. They did a full physical exam and while doing so, the doctor noticed that the color of her stool was pale like clay. As first-time parents, we were always asked if her stool was the color of mustard, but nobody specified the kind! This was a bit alarming since it was aligning with the symptoms of a disease called Biliary Atresia. Biliary atresia is a rare liver disease where the bile ducts are damaged or non-functioning which causes a blockage causing long term damage and even liver failure. There is no cure for this disease but there is a procedure called Kasai that would help increase the chances of a normal functioning liver. It would entail the removal of her bile ducts and bypass her intestines directly to her liver so the bile can naturally flow through. However, this procedure is only 30% successful and is meant to prolong a liver transplant. Moving forward, the next steps were to complete a liver biopsy to gather more information about it. The results came back and showed there were already signs of scarring. They also completed an ultrasound that showed she was born with no gall bladder. With the color of her stool, lab work, and the biopsy, the doctors determined we would be moving forward with the Kasai.
At 20 days old, Arlaya underwent the Kasai procedure. After the longest three weeks of recovery, we were finally back home, and the waiting game began. There was a three-month window to see whether the procedure worked or not. November crept up on us quickly and we completed the blood work necessary to see whether her liver was able to function with the bypass. Unfortunately, her bilirubin levels were still rising, and our doctors began planning the liver transplant process. We were scheduled two full days of evaluation at the end of December where we completed a CT scan, an ultrasound, an EKG, an echo, and extensive blood work. We also met with a full team of social workers, coordinators, transplant nurses, pharmacists, and of course the surgeons to get all the necessary information for transplant. Arlaya was officially listed on the UNOS database with a PELD score of 16. (To find out more about what a score is, please visit: https://unos.org) After a month of being listed, her liver function has gone down rapidly. The liver disease has caused fluid buildup called ascites and began putting pressure on her organs to where she’s now constantly uncomfortable. We’ve also been admitted due to infection and the increase of her ascites. She is also on total parenteral nutrition (TPN) which is a method of feeding to bypass directly into her blood stream to maximize the amount of nutrition to prepare her for success in transplant. She has a central line IV that has been placed on her chest for her to receive TPN 24 hours a day up until transplant.
A Message From Arlaya's Parents
With the encouragement of our transplant team, Brian and I decided to make a GoFund Me to allow our family, friends, and loved ones a way to help support us. Her liver disease journey started only a few days old and will follow her for the rest of her life. We felt that financial support is one of the ways that we can reduce the amount of stress as we enter this next phase of transplant. This money will go towards her medical costs (i.e., prescriptions, our home nurse, IV equipment rentals); loss of wages; multiple trips to the hospital a week (which include 520 BRIDGE toll fees); meals inpatient; and any other unforeseen costs. Any funds that we do not use right away will be put towards Arlaya’s savings for all future medical needs.
As we are patiently waiting for a living or deceased donor, we are truly VERY grateful for everyone that has reached out in support of Arlaya. We can’t thank everyone enough for keeping us in your prayers during this difficult time.
Update: Arlaya has underwent the liver transplant on February 28,2022 and is recovering beautifully. However, the medical bills are high and Arlaya's parents need all of the financial support that they can get.
Rosé for Cure is Here to Help Arlaya and her Family
We are here to support Arlaya and her parents as much as we can. From May1, 2022 through October 31, 2022, Rosé for Cure will donate 10% of their wine proceeds towards Arlaya's recovery.
How Can You Support
1. You can purchase our wine at the top of the page and we will donate 10% of the sales towards Arlaya's Recovery
2. If you would like to support by directly donating, here is the link to Arlaya's Go Fund Me Page
3. Please share Arlaya's Story on your social media channels
Why Rosé For Cure
Every Bottle Gives Back
For every bottle sold, we give back 10% in direct cash to a sick child and their family.
Unconditional Cash Transfers
No percentage cuts or administrative costs means maximum contributions to the child and their family.
We’ve chosen our farmers based on their sustainable farming practices and the unique regions in which they grow their grapes.
Total Funds Donated So Far
We donate funds every six months.