Influencer Lauren Cummings Johnson Grieves the Loss of Her 9-Month-Old, Lilly Ann.
This is truly heartbreaking. Lauren and Wilson Johnson shared that their daughter, Lily Ann, passed away on April 6 at just 9 months old. Lily had been diagnosed with Citrullinemia Type 1; a rare genetic condition that causes ammonia buildup in the body due to an enzyme deficiency. Despite her health challenges, her parents described her as a source of pure joy and sunshine in their lives
The Johnsons expressed gratitude for the time they had with Lily and for the support they received from their community. They shared their faith and hope in their messages, saying it was an honor to be Lily's parents.
It's a poignant reminder of the strength and love parents can show in the face of unimaginable loss.
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"Our sweet Lily Ann went to be with Jesus on Sunday, April 6," the couple wrote in an Instagram post, alongside photos of themselves embracing their baby girl. "She was exactly 9 months old, 9 months our beautiful miracle, 9 months of a love, joy, and sunshine in our home and hearts."
The message continued, "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."
Lauren and her husband did not share the cause of their daughter's death. The influencer had explained to her followers last year that Lily Ann had been diagnosed shortly after birth with Citrullinemia type 1 (CTLN1) and remained in hospice care at home.
Yes, Citrullinemia Type 1 (CTLN1) is indeed a rare genetic disorder linked to an enzyme deficiency. The condition disrupts the urea cycle, which is responsible for removing ammonia from the bloodstream. Without proper enzyme function, ammonia accumulates to toxic levels, especially affecting the brain and nervous system.
This disorder often requires careful medical management, including dietary restrictions, medications, and sometimes emergency interventions to stabilize ammonia levels. While rare, advancements in genetic research continue to improve understanding and treatment options for such conditions. It’s inspiring that the Johnsons found the strength to share their journey and bring attention to this condition.
Lauren had shared several pics and health updates about her daughter over the past few months. In February, the family celebrated Lily's first Valentine’s Day and the emergence of her first tooth.
Lily Ann's funeral will indeed be held at a church in Nashville on April 14. Her parents, Lauren and Wilson, have expressed immense gratitude for the love and prayers they've received during this incredibly difficult time. They described Lily Ann as a "real-life angel" who brought joy and sunshine into their lives, and they are honoring her memory with heartfelt words and faith.
What a blessing it was to be her mom and dad. "Thank you, Jesus, and thank you Lily Ann for changing our lives forever!"
