Influencer Lauren Cummings Johnson Reveals Death of 9-Month-Old Daughter

On April 7, the couple shared a joint post on Instagram, in which they revealed their daughter, Lily Ann, passed away the day prior.

“Our sweet Lily Ann went to be with Jesus on Sunday, April 6. She was exactly 9 months old, 9 months our beautiful miracle, 9 months of a love, joy, and sunshine in our home and hearts,” Lauren and Wilson began in the caption of the post, which featured a carousel of photos of them with their daughter. “We are so incredibly grateful for the promise of Heaven and the hope we have in our Heavenly Father. 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.”

“It was the honor of our lifetime to get to share her with the world,” the message continued. “We know so many of you loved her and prayed for her. She was pure joy and sunshine! Thank you all for loving her and us the past 9 months!”

The couple added, “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!”

Lauren and Wilson concluded the emotional post by sharing a quote from pastor Tim Keller.

Lily Ann — who was born on July 6, 2024 — battled a rare genetic disorder called citrullinemia type I (CTLN1). CTLN1 is “caused by deficiency or absence of the enzyme argininosuccinate synthetase (ASS),” which is “one of six enzymes that play a role in the removal of nitrogen from the body,” per the National Organization of Rare Disorders (NORD). 

According to a GoFundMe set up for the Johnsons, Lily Ann passed away “after an ammonia spike caused by her diagnosis of CTLN1.”

Lauren chronicled her daughter’s battle with the disorder on her Instagram account, @choosejoygivegrace, on which she has over 46,000 followers. She is also the founder of Choose Joy Nursing, a night nurse agency in Nashville, and Choose Joy Concierge, a program that offers luxury in-home post-surgical care.

Following Lily Ann’s birth in July, Lauren shared on Instagram in August that her daughter “was admitted to the pediatric ICU 8 hours after discharge from the hospital after birth.”

In a February Instagram post, Lauren opened up about her daughter’s condition, writing that she was “born with a condition where she cannot break down protein” and is “missing a critical enzyme in the urea cycle.”

“Lily Ann was hospitalized for her first month of life which lead to her first nasogastric(NG) tube,” she continued. “It was critical for her get a specific amount of calories so her body didn’t breakdown her own muscles for protein. It allowed access for immediate food and medications delivery. After months of feeding therapy, she was still unable to take bottles by mouth, so they moved forward with a G-tube surgery in December!”

She shared adorable photos of Lily Ann post-surgery earlier this month.

“Our angel girl 🤍 we couldn’t be more in love or more obsessed with her!!” Lauren wrote in the post’s caption. “And for those who remember how nervous I was about her gtube – it’s been amazing and so life saving for us!!”

Following the infant’s passing, she shared on her Instagram Stories, per PEOPLE, that she and her husband were “fully prepared” for their daughter to only live a few weeks or a month due to her condition.

Lauren shared information regarding Lily Ann’s memorial on her Instagram Stories, sharing that the funeral would take place on Monday, and would be livestreamed. She also provided links to the family’s GoFundMe as well as Alive Hospice, which she said “provided Lily Ann with the utmost care, love, and compassion throughout her 9 world-changing months on earth.” Lauren also provided a link for those who would like to donate to Vanderbilt Hospital, where Lily Ann was hospitalized three times.