Influencer couple announce the death of their "beautiful miracle" baby daughter at exactly nine months old

Lauren Cummings Johnson and Wilson Johnson uploaded a joint Instagram post to announce the death of little Lily Ann.

Alongside a carousel of photos, which included a heartbreaking photo of them crying and cradling their late daughter, they wrote: "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. 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."

The grieving couple added: "It was the honor of our lifetime to get to share her with the world. 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. 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!"

Lily Ann had a rare genetic disorder called citrullinemia type I (CTLN1). CTLN1 is " a rare, autosomal recessive urea cycle disorder caused by a deficiency in the enzyme argininosuccinate synthetase. This deficiency prevents the body from properly processing ammonia, leading to its buildup and toxicity,” according to the National Organisation of Rare Disorders (NORD).

According to a GoFundMe page set up for the Johnsons, Lily Ann died "after an ammonia spike caused by her diagnosis of CTLN1."

Lauren documented her daughter's battle with the disorder with her 48,000 followers on her Instagram account, @choosejoygivegrace. About a month after the tot was born on July 6, the new mum shared on an August Instagram post that her little girl had been “admitted to the pediatric ICU 8 hours after discharge from the hospital after birth."

Then, in February Instagram post, Lauren spoke further 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."

She explained: "Lily Ann was hospitalized for her first month of life which lead to her first nasogastric(NG) tube. 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”.

Then, earlier this month, she shared photos of Lily Ann post-surgery. "Our angel girl,” she wrote. “We couldn’t be more in love or more obsessed with her!! And for those who remember how nervous I was about her gtube - it’s been amazing and so life saving for us!!"

After Lily Ann’s death, she shared on her Instagram Stories that she and Wilson were "fully prepared" for their daughter to only live a few weeks or a month due to her condition. The baby girl’s funeral was held yesterday, (Monday April 14),

The GoFundMe page is still open, and donations are still being asked for in Lily Ann’s memory to “alleviate some of the financial burdens and stress that come with such an overwhelming loss”. At the time of writing, on the morning of Tuesday April 15, more than $25,000 has been raised towards a $40,000 goal.

The page also stated that any amount raised above the needs of Lauren and Wilson will provide support for Alive Hospice, which Lauren said "provided Lily Ann with the utmost care, love, and compassion throughout her nine world-changing months on earth." On her Instagram Stories, Lauren also provided a link for those who would like to donate to Vanderbilt Hospital, where Lily Ann was hospitalised three times, and where she said staff respected her daughter and treated her as a “person not a patient”.

The couple have been sent many messages of condolence and support on their Instagram post. One said: “Lily Ann’s and your story changed me as a mother, how you said something like “who are we to keep her from Jesus”… you are the best and strongest mom. I’m so sorry, I’ll be holding you close in my prayers.”

Another mum who appeared to have lost her child, and may know Lauren and Wilson personally, wrote: “We will never ever be the same and we will never ever forget our precious Lily Ann! We love you guys so much. Chapman was waiting for a play date with his soul sister. They’re perfect and whole now. We will miss them every day until we get there.”

A third person said: “ She changed my life and I never even met her. The impact her story and this miracle had on me was truly beyond. I love you guys I will keep praying for yall and I know Lily Ann is walking with Jesus pain free .”