She’s one tough tot.
A Florida mom is melting hearts online after relaying the harrowing tale of how her baby girl nearly died due to a rare condition that prevents her from breathing. Despite her dire circumstances, the tyke is now alive and thriving.
“She is as bubbly as they come: calm, tolerant, and so very happy,” Lorin Messer, 27, told Jam Press of her 1-year-old pride and joy, named Finlee June. “My hope is that she is always respected, accepted and valued. Her craniofacial differences do not lessen her worth.”
Finlee suffers from Treacher Collins syndrome, a rare genetic disorder characterized by severe abnormalities of the sufferer’s head and face, according to RareDiseases.org. As a result, the patient often suffers underdevelopment of the cheekbones, jaws and mouth, which can, in turn, result in potentially fatal breathing and feeding difficulties.
TCS affects one 1 in 50,000 people, while affected parents have a 50% chance of passing on the gene to their children.
The heart-wrenching saga began in 2021 after Messer, who lives in Newberry, Florida, was informed by doctors that her baby might be born with an undersized jaw. They subsequently conducted a series of tests on the tot to see if she suffered from any genetic abnormalities.
Fortunately, tests came back normal with medics assuring the stay-at-home mom that they could fix her aberrant mandible via surgery at birth.
However, the thunderbolt struck after Finlee was born in February 2021, whereupon doctors diagnosed her with TCS “at first glance.”
“I was numb from her birth up until her NICU discharge,” Messer told NeedToKnow.com of the horrific realization. The diagnosis was particularly alarming as neither Finlee’s dad Jeremy, 29, mother, nor her older sister, Maylee, 2, were affected by the gene.
In light of the tyke’s serious condition, doctors placed her in the emergency room, where she remained for six weeks while on a ventilator.
“There was a wire and/or tube for everything keeping her alive,” said Messer. “We feared every day that it was going to be our last with her.”
The distraught parent continued, “Her health was very, very delicate. The diagnosis wasn’t important to us, her life was. We would love her unconditionally no matter what, we just wanted her to be stable.”
The TCS also left Finlee looking extremely undersized for her age. “She was the size of a small baby doll, she had the darkest curly hair, dark eyes, bronze skin and the smallest little chin,” described Messer. “Thankfully, she always looked so peaceful — never in pain.”
During one particularly terrifying episode, the poor girl choked on milk without any nurses present, which resulted in her having to be “bagged and developing tracheatis,” Finlee’s mom recounted. Prior to that, she had been getting weaned off the ventilator, but the breath-taking incident forced her to go back on the breathing machine for a whopping eight more months.
“It was a scary, upsetting time,” lamented Messer, who was finally able to bring Finlee home from the hospital in March.
Finlee might’ve been out of the emergency room, but she wasn’t out of the woods. In order to keep her alive, the tot still sports a tracheotomy tube, gastrostomy tube, along with hearing aids, all of which require constant maintenance.
“Her needs change from day to day,” explained Messer. “In the morning, we clean around her trach and tubes and put her hearing aids in. Then, I mix her food and put it into her feeding pump for breakfast — we do this another four times throughout the day.”
The beleaguered mom continued, “The rest of the day involves keeping her and her sister entertained, naps and some suctioning of Finlee’s trach when she needs it. Once a week, we do a complete trach change, unless something prompts it early, such as a blockage.
“Getting out of the house now requires three diaper bags, and one or two bags full of medical supplies,” exclaimed Lorin, who joked that she went from a “stay-at-home mum to having a self-taught nursing degree.”
And the struggle isn’t merely physical, as Messer’s daughter reportedly draws stares from strangers wherever she goes.
Fortunately, “Nine out of 10 people are staring because she’s different, she’s interesting,” explained Messer. “I enjoy engaging in informative conversations about her when the opportunity presents itself, explaining how and why she is unique.”
Ultimately, she feels that “education is huge in cases like our little Fin, because some people who approach others with negativity don’t necessarily mean it, they just don’t understand.”
“We have people in our life who all love Finlee, accept her and care for her — to the point that even a slight bit of negativity wouldn’t alter our surrounding bubble of positivity,” she said.
Messer is nevertheless amazed at how her daughter has managed to thrive in the face of adversity.
“She smiles from the minute she wakes up until the second she goes to sleep,” said the proud parent. “Finlee is not cookie-cutter and that is my favourite thing about her. I love her tiny earlobes and her big, bright eyes.
She added, “My concern for the future is that Finlee sees herself the way that we see her – so very beautiful. But this baby loves a mirror, so I think life will be just fine!”
Lorin summed up the situation like this: “We’ve adapted extremely well and couldn’t imagine a life that didn’t have little Finlee June in it.”