Her story began when she was barely a year old.
Evie Kate Shearer was born a healthy baby, but when she was eight months old she contracted bronchiolitis RSV, said a Mirror report. In the spa of 12 hours her health deteriorated and was put into in an induced coma.
Three days later she suffered a cardiac arrest and had to be resuscitated with adrenaline.
“Consultants told me there was a slim chance of her coming round and talked about turning off the ventilator but I refused,” said Abbi. “Within two more days she opened her eyes and brought herself out of the coma.”
And then one morning, Abbi noticed that her daughter’s arm had gone limp, and it plopped down when she picked her up.
A scan was ordered, and she was diagnosed with spinal muscular atrophy respiratory distress (SMARD). The doctors said that she will never smile or talk or have any quality of life.
“It was a one in a million chance,” Abbi said. “If she hadn’t got the chest infection, it could have happened when we were out shopping and I’d have lost her there and then.”
But the concerned mother wasn’t ready to give up, and so she googled what SMARD was and informed herself. She discovered a boy on the internet who had a tracheostomy and portable ventilator.
Photo credit: Liverpool Echo / Mirror
Abbi wanted the same for her daughter, despite doctors’ qualms that Evie wouldn’t cope with ventilation.
“They said she might not pull through the operation, but I said ‘if I lose her at least I know I’ve tried my best for her.’ The wait for her to come out was horrendous, I couldn’t describe it, but when she did the feeling was unbelievable.”
Despite the delicacy of the procedure, however, Evie endured. In fact the toddler came out of the ICU wide-eyed and smiling.
“They told me she’d probably never speak or even make a sound, but three hours after the operation as I was sitting holding her hand she looked up at me with these big blue eyes and said ‘mama,’’ Abbi recalled. “It was the first time she’d spoken and she’d literally just come out of life-saving surgery.
“I was sobbing all over intensive care. The doctors were astounded by her, she’s just a miracle.”
Admittedly, Abbi isn’t sure what the future holds for them, how much time they have with each other, but for her having Evie with her right now is enough.
“It could end tomorrow, or next week, or it could be 10 years,” she said. “She’s gone against everything that’s been expected so we just don’t know, but I’m fully accepting that I’m not going to have her forever. I just take every day as a bonus.”
READ: Baby with rare genetic condition is born without a nose
If you have any insights, questions or comments regarding the topic, please share them in our Comment box below. Like us on Facebook and follow us on Google+ to stay up-to-date on the latest from theAsianparent.com Philippines!