Takyla’s pain

Two year old is Barbados’ first known spinal muscular atrophy case

The past year or so has not been easy for Patricia Hunte of Deane’s Village, Hindsbury, St Michael, as she has been watching the last of her three children wither before her very eyes.

Yet, nothing she feels can begin to approach the pain that her two-year-old daughter Takyla Lynch is experiencing.

Takyla Lynch

Despite her lion heart and an angelic smile that lights up the room, Takyla is suffering from spinal muscular atrophy type 2 (SMA II), an inherited condition that affects the muscles.

As a result, the Queen Elizabeth Hospital (QEH) has become the child’s virtual home, where she is hooked up to several machines – tracheostomy for breathing, a gastrostomy tube in her side for feeding, and a ventilator.

In an interview yesterday outside the Children’s Ward of the QEH, Hunte told Barbados TODAY she felt everything was normal during her pregnancy and after she gave birth.

However, by the time Takyla was four months old she began suspecting that something was wrong.

“I got worried, I took her to doctors and heard babies develop differently, but I was told at four months that she was a lazy baby,” the 32-year-old mother said.

SMA II affects children from six to 18 months old, and the symptoms range from moderate to severe and usually involve the legs more than the arms. The child may be able to sit and walk or stand with help, according to WebMD, the online medical community.

It says SMA causes a breakdown of the nerve cells in the brain and spinal cord, causing the child’s muscles get weak and shrink.

Children with the disease can have trouble controlling head movements, sitting without help, and even walking. In some cases they can have trouble swallowing and breathing as the disease progresses, it adds.

Hunte would have noticed some of these symptoms as Takyla’s condition worsened.

“When she was eight months she was seen to be floppy, and that is when everything went down. On June 30 she went into respiratory distress, only to find out she had a collapsed lung and pneumonia.” Hunte said.

After a four-week stay at the QEH, Takyla spent six weeks at home, but had to be readmitted to the Paediatric Intensive Care Unit. She has been a patient there since.

Even at that stage the mother knew little about the condition, so she googled it, and the result of her search was not encouraging, and sent her into a state of denial.

“I blew it off until we had the family meeting, then to hear that. When reality kicked in, I broke down,” she told Barbados TODAY.

Takyla’s father, Anthony Lynch, who Hunte refers to as Daddy, has been a rock throughout the difficult times, providing unwavering support, Hunte said.

Takyla Lynch (centre) receives a kiss from her mum Patricia Hunte and her dad Anthony Lynch.

Daddy was stronger than me. He is my shoulder. You can look at him and see he is feeling it, but he plays strong man to
support me.”

However, Lynch – the father of Hunte’s three children, but he also has a fourth child who lives with them – is the sole breadwinner since Hunte quit her job to take care of her daughter.

Therefore, she said, it is not easy to make do.

“If I knew that it would have been so costly I would have kept my job so that I would be able to support Daddy. So what I do to help is that I make ribbons and other little things to help. I have a very supportive team,” she said.

Takyla is the first known case of SMA in Barbados, according to the QEH, and the cost of treatment is astronomical.

It was only in December last year that the United States Food and Drug Administration approved nusinersen, sold as Spinraza, as the first drug approved for use in treating the rare neuromuscular disorder in both children and adults.

“The drug is an injection in her spine the first year only is US$775,000, and after US$350,000,” Hunte said.

With this sort of funds a long way out of her reach, the mother said the next best thing was to try to ensure Takyla is as comfortable as possible.

She would like to have the child back home, but this too is costly because she will need equipment, which would include a portable ventilator, suction machine, feeding pump, cough assist machine and, the most expensive of all, a ventilator which costs in excess of $10,000.

World SMA Awareness Day was celebrated on Saturday, August 12, and a vigil, which was well attended, was held at the QEH for Takyla.

Hunte said a number of people have since been calling to find out what they can do to help. She said although some days are tougher than others, what matters is Takyla “is very happy, always upbeat and happy, and that is what keeps me going”.

kobiebroomes@barbadostoday.bb

One Response to Takyla’s pain

  1. stephanie August 16, 2017 at 11:48 am

    She looks happy and mum says that’s what keep her going but my prayers are with you and I pray that help would come in some way I hope that one of the Children’s charity would come to Takyla’s aid and help in some way .keep the faith and be strong and may God work a miracle in this beautiful child’s life God bless you in what ever you do

    Reply

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