Help us support little Daisy Odom, recently diagnosed with Alagille syndrome. Daisy and her sweet family; Katie (mom), Chris (dad), and Max (big brother) have many unexpected medical expenses now and will have many more to come. Our hope is to surround the Odom family with prayer and provide financial support as they carry their daughter, Daisy, through a number of hospital stays, medical procedures, specialist visits, and eventually a liver transplant. Funds raised will go toward Daisy's current and future medical expenses, and travel expenses when a liver becomes available. (Go Fund Me account lovingly set up by Alexandra Biggers.)

 

A message from Daisy's parents:

Daisy was born May 29, 2021, and had a normal delivery. She was a little bit jaundice at birth but, we were told not to worry and that it would go away on its own eventually. Unfortunately, it never went away. Daisy was showing signs that something was off. We are grateful her pediatrician took her symptoms seriously and ordered blood work, fit her into his schedule, and ended up sending Daisy to the hospital. After a two-week hospital stay with daily bloodwork, tests, and surgery, she was finally diagnosed with Alagille Syndrome. We thank Jesus for His guidance every step of the way. We have seen Him move mountains on behalf of our Daisy girl.

 

Alagille syndrome is a rare genetic disorder that can affect multiple organ systems. For Daisy, it affects her heart and liver. Her heart has a narrowing of the arteries and her liver has very few/small bile ducts. This means that bile builds up in her liver and her liver isn’t able to function correctly. Daisy also has some other complications that the doctors are trying to figure out. She has a total of 11 doctors between CHOC and UCLA. Through her diagnosis, Katie also got diagnosed with Alagilles. Katie’s heart (known about since birth) and liver are affected and need yearly monitoring. Katie’s condition is not severe like Daisy but we are grateful to have this diagnosed so we can keep an eye on it.

 

We are often at her doctor's appointments at CHOC or UCLA or getting blood work done to monitor Daisy closely.

 

We are unsure when she will need a liver transplant as there are just so many unknown factors but we are grateful she is on the list and ready to receive one when it’s time.

 

We do not know what Daisy’s future will look like, but we trust Jesus with her life and are enjoying each new season with her as she grows!

 

Prayer requests:

-continual prayer for blood draws to go smoothly.

-for Daisy's heart condition to stay stable.

-relief from her itching.

-that the new medication we can get her on once she turns one will drastically help with itching and improve her numbers.

-God's timing for her liver transplant.

-God would protect Daisys heart, mind, and soul as she grows and learns about her condition.

-For God's provision for all the medical and travel expenses.

 

Current update (1-28-22):

-She’s officially on the liver transplant list.

-It seems like the combo of itching medicine is finally giving Daisy some relief. When she’s one year old, she will be on a new medication that will help with itching and improve her liver numbers.

-Her liver enzyme and bilirubin continue to trend up (which isn’t great, but it’s to be expected since she has few and small bile ducts in her liver).

-in December, a spot was found on her liver during her ultrasound so we will be getting an ultrasound every 3months to keep an eye on it