This is Lily. Lily is a 10-year-old girl from North Alabama. She likes to dance, play basketball,
hike, swim, read, do crossword puzzles, color, build with Legos, make bracelets and ear rings,
watch movies with her family, play with her dogs, bike, craft, paint her toenails, trampoline, play
board games, play cards, write stories, play with her little sister, archery, and she LOVES to
SING and write songs. Oh, and her favorite color is teal.
I imagine you could look at that description and think, “Yeah… that sounds about like a 10-year-
old girl.” Maybe many of those likes remind you of a particular 10-year-old girl. On October 20,
2018, I’d guess Lily wasn’t thinking about too many big questions in life. Maybe some school
stuff. Maybe some upcoming candy stuff. Maybe some minor friend or family stuff. Maybe the
details of some of those things she enjoys.
But, the next day, Lily would go to the Urgent Care because of a swollen belly. From there, she
would be sent to the emergency room for blood work, a liver scan and a sonogram. By the
morning of 22 October, she’d have her first ambulance ride to Children’s of Alabama in
Birmingham where she would soon be diagnosed with acute liver failure. Two days between
happy, healthy 10-year-old girl, and 10-year-old girl with acute liver failure.
It would be another two days of poking and prodding and testing before Lily would be diagnosed
with Autoimmune Hepatitis and Cirrhosis of the liver, and be placed on the Transplant list. Her
Pediatric End-stage Liver Disease (PELD) score was 20 and she was placed on a strict low-
sodium diet to go along with immunosuppressant drugs. (You read that right, “Pediatric End-
Stage Liver Disease). So, what does that mean? Basically, at this point (4 days since life as
usual), the skilled pediatric doctors at Children’s of Alabama expected Lily to need a liver
transplant within the next year.
Now, when we think of transplant, most of us probably have very little context – I know I do not.
When we think of transplanting an essential organ on a 10-year-old girl, even without context,
it’s a frightening proposal.
I’ve got to share with you a bit of my perspective on this phase of Lily’s story. From my
perspective, I’m seeing and hearing a big, (sometimes) loud, always confident man who has
become a puddle of a human at the prospect of watching his daughter suffer for years before
ultimately losing her in this life. I’m seeing a tremendous outpouring of support from the friends
and family of the Teeters. I’m seeing people giving, people loving, people encouraging, and
(most importantly) people praying for Lily and her family.
One of the questions people often asked me during this time was, “Is there a GoFundMe?” And,
that was a question I relayed to Jon (Lily’s Dad) – “Do you want us to set up a GoFundMe?” His
answer was consistent with who I thought he was. He was concerned about asking people to
essentially contribute to a slush fund for his family. He thought about the cost to the givers, the
loss due to the website’s cut, the loss due to taxes, etc. And, fortunately, that’s where COTA
came in.
COTA is the Children’s Organ Transplant Association. It is a non-profit dedicated to providing
financial support to transplant patients. When you contribute directly to COTA in honor of Lily,you are eligible for a tax benefit. 100% of your contribution goes for transplant-related expenses.
And, because that includes her continued treatment for autoimmune hepatitis, every cent raised
goes to COTA to help keep Lily healthy. Now, it’s a bit foreshadowing that I’d mention the “what if” scenario of Lily’s health improving. Because through prayer and a strict diet and well-balanced medication, Lily’s health has improved. Her 16 November check-up gave her a PELD score of 10. And since that scoring, her liver has fairly well stabilized. But, that doesn’t really mean everything is golden. Lily is still on the transplant list. Even if Lily one day improves to the point of being removed from the transplant list, her doctors expect this to be a life-long condition which will require treatment, diet restrictions, and the utmost respect for exposing herself to sickness. In fact, the smart play anytime she has a high fever is to take her to the ER in Birmingham – a 3 hour roundtrip plus ER time. Lily could still really use our help. The help we were quick to offer when things were the most dire, is still needed now that God has come through.
Lily has been taken out of school and is doing well in Home Bound. Gina (Lily’s Mom) has had
to resign from her job to care for Lily fulltime. Audrey (Lily’s sister) is now attending school
without her big sister there to guide her. So, this family has become a single-income family with
the not-unusual, high-deductible insurance plans that many of us deal with today. And, likely a
lifetime of taking a drug that actively suppresses her immune system, just to keep it from
attacking her liver.
Now… what can you do? Well, obviously you can donate through this website. As mentioned
before, every contribution made is eligible for a tax deduction and all of it goes for transplant-
related expenses. Not everyone is able to spare money to directly donate, and that’s ok. You can
still help. You can volunteer to help in one of the upcoming fundraisers, you can participate in a
fundraiser (some of them will likely involve eating – we all have to eat, right?), you can tell
your friends about Lily and the campaign to help her and her family. All I’m asking is that you
do whatever you can do. I’m asking you to understand that this is a life-changing event and to
give a little grace. I’m asking you to encourage. Most importantly, I’m asking you to pray for
Lily and her family.
– Dusty
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
Also, you can buy a NeverLoseHope Apparel shirt at Never Lose Hope Apparel.
I love you Lily! You and your family are in my prayers.
LIly I am praying for you! My heart hurts for you and your family but we serve an amazing God who will do what HE will for this matter. I will keep checking back for your story!
We love you guys! Know that you are in our prayers and through God all things are possible and work for His good.
You are a precious gift from God and I know that God is in control . You and your family are in my prayers . Love you sweet Lily .
Can people be tested to see if they are a match for a living liver transplant? UAB did not do those years ago – but they may now. Vanderbilt does them I know.
I am praying for you sweet Lily.