Written by parents of Kaelyn:
Kelvin and Shuhui
Diagnosis: SMA Type 1
Kaelyn was born in February 2012. She came out to this world crying loudly, probably just like any normal baby.
3 months down the road, physically she was growing but her head was floppy and she missed her developmental milestone.
We were at the paediatrician for a routine visit when we were advised to bring Kaelyn to a neurologist for a check.
We went and the neurologist saw her floppiness and suspected SMA (Spinal muscular Atrophy). That was the day we first hear of this genetic condition. That day Kaelyn’s blood was drawn and submitted to test for SMA.
We read up online on the symptom of the disease. Everything seem to fit. But we were hoping for the best still as the results weren’t out.
The words of the neurologist sank in. We were devastated. Tears flowed when the thought of Kaelyn’s prognosis came to mind.
The 3 weeks wait for the test results was agonizing. But when it came out, it just confirmed the neurologist’s suspicion. Kaelyn was positive for SMA.
She is unable to lift her head, flip herself over or even sit up on her own. She may never will. Her body will lose control of her muscles and it will atrophy. Every body function that requires muscles will be affected. From lifting her head, limbs, breathing, swallowing, feeding and even speech will be affected.
SMA is a degenerative disease. This means as time progresses, she will only grow weaker.
Kaelyn was hospitalized in her 10th month for a collapsed lung. She caught a virus 1 week into the hospital stay and ended up in ICU, fighting for her life. She was hospitalized for a month.
She survived that episode. She came back home, but with a collection of equipment (BiPap, oximeter, suction machine, milk feed pump, oxygen cylinder) in tow.
We paid fully for her equipment as we weren’t under any medical fund assistance or covered by insurance at that time.
She has to be on the BiPap for almost 24 hours to assist her breathing as she does not have the strength to breath sufficiently on her own for long. She only takes her BiPap off for her bath daily.
Oxygen is supplemented if she is unable to keep up her oxygen saturation level due to illness or she is unable to handle her secretions.
She has a oximeter tied to her extremities all the time except bath time. This is for us to monitor her vital stats.
She also has to be on continuous feed for 18 hours a day as normal feeding has the risk of aspiration for her plus her swallowing is very weak. She does love the taste of fresh apple slices, licking it (she can’t chew hard enough or swallow) for the flavor.
She is currently doing well at home and always enjoys a good song or story telling by family and friends or the company of little kids her age.
She has her blog http://kaelyn-a-day.blogspot.com/ where we update her activities and happenings to serve as reference and memory for us.
Little Kaelyn passed away peacefully in April 2015. The parents didn’t see it coming but they have learned to accept it. Letting her go is the best for her and the family.