On April 7, nursing influencer Lauren Cummings Johnson and her husband, Wilson Johnson, shared the tragic news of the passing of their nine-month-old daughter, Lily Ann, who died on April 6. The couple expressed profound sorrow in their heartfelt Instagram post, celebrating Lily Ann’s brief yet impactful life.
Lily Ann’s Health Journey
Brought into the world on July 6, 2024, Lily Ann faced significant health challenges immediately after birth, requiring a month-long hospitalization. In an Instagram post dated February 7, Lauren revealed:
“Lily Ann was born with a condition where she cannot break down protein. She is missing a critical enzyme in the urea cycle.”
In the months preceding her death, Lily was frequently photographed with a nasogastric tube, a vital component for her care. Lauren elaborated on its importance:
“It was critical for her to get a specific amount of calories so her body didn’t break down her own muscles for protein. It allowed access for immediate food and medication delivery.”
Due to her inability to feed orally from bottles, even after months of feeding therapy, doctors placed a G-tube into Lily’s stomach in December.
A Heartfelt Tribute
Following Lily Ann’s untimely passing, the Johnsons honored their daughter’s legacy with words full of love:
“9 months our beautiful miracle, 9 months of love, joy, and sunshine in our home and hearts.”
The couple expressed their faith in “Heavenly Father,”believing in a loving journey for their daughter:
“His ways are higher and better than ours, even when we don’t understand it. He blessed us every single day for the past 9 months and we will never be the same.”
Lauren and Wilson called it “the honor of our lifetime”to share Lily Ann’s life with the world and thanked everyone for their prayers and support. They tenderly described her as “pure joy and sunshine,”stating:
“We always said she was a real-life angel. What a blessing it was to be her mom and dad. Thank you, Jesus, and thank you, Lily Ann, for changing our lives forever!”
The Struggles of Citrullinemia
The couple didn’t disclose the specific cause of Lily Ann’s death. However, last year, Lauren communicated about Lily Ann’s health struggles, revealing a diagnosis of Type 1 Citrullinemia. This condition, confirmed by a geneticist, eventually led Lily Ann to receive hospice care.
As described by Medline Plus, Citrullinemia is “an inherited disorder that causes ammonia and other toxic substances to accumulate in the blood.”The Type 1 variant is typically identified within days after birth.
On her Instagram Stories, Lauren provided more insight into Lily Ann’s diagnosis, stating:
“A rare autosomal recessive genetic disorder CTLN1 caused by deficiency or absence of the enzyme argininosuccinate synthetase (ASS).”
Lauren acknowledged that Lily Ann’s condition would be a “lifelong battle.”In the wake of their daughter’s death, the Johnsons’ post drew an outpouring of love and support from followers who had closely followed Lily Ann’s journey.
For more details on this poignant story and the insights from Lauren and Wilson about their experiences, you can find additional content here.