2-y-o Takyla smiling despite rare Spinal Muscular Atrophy disease
Barbados is joining with people around the globe who are affected by Spinal Muscular Atrophy as persons hold hands, carry candles, and whisper prayers outside the Queen Elizabeth Hospital tonight for two-year-old Takyla Lynch.
About 50 persons are in attendance at present and they are being educated about the rare disease on the steps out front the hospital at this moment.
The vigil is to raise awareness of persons affected by Spinal Muscular Atrophy (SMA) and is being held on the lawns of the main entrance of the QEH.
The motivation behind the event is Patricia Hunte’s two-year-old daughter Takyla Lynch who has been diagnosed with Spinal Muscular Atrophy (SMA) Type II, and has been a patient in the Pediatric Intensive Care Unit at the Queen Elizabeth Hospital for the last nine months.
Spinal muscular atrophy is a genetic disease affecting the motor nerves that cause muscle weakness and atrophy (wasting). The motor nerves arise from the spinal cord and control the muscles that are used for activities such as breathing, crawling, walking, head and neck control, and swallowing. SMA is a rare disorder affecting approximately one out of 10 000 worldwide with Takyla being the first known case in Barbados.
“The vigil is being held worldwide in support of all patients with SMA; but because Takyla is the first known case in Barbados, I decide to hold a vigil tomorrow [Saturday, August 12, 2017] for her, just to raise awareness of SMA,” the mother said.
She said it was very hard at first when she found out, since Takyla is not the first child she has. According to Hunte the child was admitted last year November but was only diagnosed in January 2017.
“Me and her father take turns at the hospital so one of us is always at her side. It is still very, very hard. Sometimes we don’t feel like eating and we don’t get enough rest; but Takyla has that beautiful smile that captivates the heart of everyone and I think that is what keeps us going,” she said.
According to the mother, there was a drug that was recently approved by the FDA in December in the United States. But she says it is a treatment and not a cure.
“It will help Takyla in terms of her muscle weakness, so she will have a better chance at life and she will be able to do things she has not done before like walking, she may not walk the first year, but may do other things, because the drug tends to get them a little stronger,” she explained.
The QEH she indicated is trying to get her daughter overseas, but that has so far not materialized since there are some logistics to be sorted. She further noted that they are not able to take her from hospital as yet since she is a ventilated patient and they will need to get a portable ventilator and other equipment.
She was calling on Barbadians to come out and support her in her quest to raise awareness at the vigil.“When Takyla was admitted last year she was admitted with pneumonia, she had a collapsed lung, so had I not gotten her here in time, her death certificate might have said pneumonia. I did not know about it that I was a carrier until she got sick,” the passionate mother said.