About Addilyn Hawks

With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure.  The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  In Fort Collins, Windsor, Loveland and Greeley, Colorado volunteers are raising funds for transplant patients like local baby, Addilyn Hawks. 

Addilyn is the daughter of Aaron and Krystin Hawks.  Born on December 19, 2010, Addilyn was diagnosed with Progressive Familial Intrahepatic Cholestasis-Type 2.  The doctors at the Children’s Hospital of Colorado in Aurora, have recommended a life-saving liver transplant.  An estimated $75,000 is being raised by Fort Collins, Windsor, Loveland and Greeley, Colorado                                                               volunteers.

 

Below is a letter written by Addilyn's mom, Krystin Hawks.

I am now currently living in Colorado. I met my husband, Aaron Hawks  in 2007 and we were married in 2009. Thankfully, my parents were able to move out here in 2009. Colorado is a beautiful place to end up.  I found out I was pregnant in March of 2010 and on December 19, 2010 gave birth to a beautiful baby girl, Addilyn Michelle! She has been the biggest blessing in our lives and a true testament of God's love for us.                  

On August 5, 2011 my brother noticed the whites of Addilyn's eyes were a pale yellow color. I took her to Urgent Care that night and we were immediately referred to the local hospital. She was admitted to the hospital with elevated bilirubin levels (jaundice) and they wanted to run some tests the next day. Addi was released the next day, all her tests came back negative, but we were referred to a liver specialist at Children's Hospital Colorado. On August 7, 2011, we made our way down to Children's to meet Dr. Mack, an amazing doctor that has become such a huge part of all our lives. They began testing for different things. Each test that came back negative would prompt Addi's doctor to start another test, that of which was more serious. After months of tests, routine blood draws, a liver biopsy, a hospital stay, a special diet and another trip to the ER Addilyn was finally diagnosed. On October 11, 2011 Addi was diagnosed with Progressive Familial Intrahepatic Cholestasis Type 2 or PFIC-2. This is a genetic liver disease that without treatment causes liver failure and eventually death. Other symptoms include jaundice, severe itching, liver swelling, vitamin deficiency, liver cancer and stunted growth. There is no cure for this disease but the symptoms can be reversed with liver transplant. 

When Addilyn was diagnosed with PFIC-2 we were told that because of her amazing health and growth she would not be added to the transplant list for another 6 months to a year. This was all despite the fact that she had and still has stage 3-4 of 4 permanent  liver scarring or what doctors call cirrhosis. At the beginning of November 2011 we took Addi down to Children's for her routine exam. They drew labs and found that the cancer marker in her blood called AFP(Alpha Fetoprotein) was extremely high. An ultrasound was done on her liver and that's when they spotted the tumor. She ended up having a CAT scan and an MRI and the results were read by several radiologist at the adult hospital right next to Children's. They all came to the conclusion that Addi in fact did have liver cancer and she was placed on the transplant list immediately. At first the thought of having a baby with cancer was devastating. But after a lot of prayer and contemplation we felt that the presence of cancer in Addi's liver was a way for her to get a transplant sooner and a huge blessing because we wouldn't have to see our baby get sicker. At the beginning of this year we ventured down to Children's for Addi's routine exam. They drew blood and found the cancer marker in her blood had dropped significantly. Her doctor proceeded to schedule Addi for a liver biopsy to check the tumor and make sure it was in fact cancerous. I heard from Addi's doctor Sunday, January 22, 2012 and she told me that no cancer cells were found. Because the presence of cancer was the reason she was put on the transplant list, her doctor has taken her off. What a great thing it is to know our baby is cancer free, but this news comes with a price. The genetic disease Addi has is not curable. The scarring cannot be reversed. Her liver is slowly failing and the only way to fix it all is for her to have a transplant. Addi is so happy and she is growing beautifully. She is on medication to help subdue the symptoms of the disease. With the help of COTA, fundraising will continue. She will need a liver transplant in the future to save her life. Her doctor does not want to perform the surgery now because unfortunately, liver transplants come with a 5% chance of death. Addi's doctor wants to give her the best chance at life. She will continue to be monitored closely at Children's Hospital Colorado.

This is by far the scariest thing I have been through in my 24 years of life. 2011 proved to be a very challenging year and 2012 will probably turn out the same way as well. We are confident that Addilyn is in God's hands and know He could miraculously heal her if He desired. However, we also want God's will in this situation and His will might be to provide her with healing through a new liver. It is not always an easy task, praying for God's will. We would love to see our baby completely healed and no transplant needed. However, we want God to be honored in this situation. She was dedicated to God at 3 months and we know she is in His hands.

If nothing more we ask that you stand with us in prayer for our baby. With that being said, we could also use your support financially. We do have insurance for Addi but unfortunately it cannot cover everything. We are looking to face $8,000 in out of pocket expenses in the first year after Addi's transplant and about $2,000 every year after that. This includes anti-rejection medications that she will have to take for the rest of her life. We hope that you will pray about it and consider helping us out in this way. We are part of a organization called Children's Organ Transplant Association or COTA. This is a non-profit group that helps with fundraising. They have an account set up in Addi's name and amazingly all the money we raise goes towards transplant related expenses. You can get more information about the organization at www.COTA.org. We encourage you to check them out and read the other stories of the children they have helped! We are so very blessed to have them working in Addi's interest.

We thank you so much for your willingness to help and to stand with us in prayer for our sweet baby girl. We know God will come through. Please feel free to share this letter with anyone you choose.  

                                                                With Love, Krystin Hawks

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