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. Right now, today, 21 February 2019, Lily is awaiting results of a
biopsy she had on Valentine’s Day which may result in her being removed from the Transplant
list. God willing, that is the outcome we should all be praying for.
But, that doesn’t really mean everything is golden. No matter the result of her Valentine’s Day
biopsy, Lily’s 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 involved 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