Laventille woman begs doctors to help her daughter walk again

NATALIE Isaac, a mother from John John, Laventille, is graced with unwavering strength, providing physical, medical and emotional support for her bedridden 12-year-old daughter Kermika.

Seated at her daughter's bedside, Isaac, 42, said, "She wanted to be an artist and a runner."

Kermika's eyes were slightly open, gazing out of her bedroom window at her John John, East Port of Spain home.

The former student of St Philip's Government School saw her ambitions come to a sudden halt about two and a half years ago when she was hospitalised after a seizure.

Her condition deteriorated during months in hospital, and she went home with a strange and worrying illness that remains a mystery. She cannot move her limbs or any part of her body without help.

Isaac spoke carefully, bearing in mind that while her daughter cannot speak and is almost completely motionless, she is conscious, sensitive and intelligent.

"She knows everything that's going on," said Isaac. Communication is limited, but Isaac says she has a natural instinct to figure out what's wrong, even though Kermika has no other means of expressing hunger or pain but to cry.

"She also cries when I cry. She cries when I'm not with her and will only sleep properly if I'm with her," said Isaac.

Isaac left her job to care for her daughter full-time, with financial disability assistance provided by the State. Kermika is the fourth of her six children.

In 2018, Kermika, an otherwise perfectly healthy and energetic child, began having seizures.

"One day, my (other) daughter was lying down next to her. Kermika (started to) beat up and froth, and her eyes was rolling up in her head.

"We rush her out the road to get a vehicle to carry her.

"Same time the police was out there. We didn't know how we was getting vehicle at one in the morning, because this is a high-risk area. The officer hear me bawling and came out he van and leave back two of them (children) and reach to Port of Spain.

"She stopped breathing three times."

Kermika was revived at the Port of Spain General Hospital and then transferred to the Eric Williams Medical Sciences Complex in Mt Hope. That's where Isaac said things started falling apart quickly.

A CT scan showed a spot in her brain. As of now, they have not determined what it is. However, doctors have ruled out a tumour, fluid, or a blood clot, Isaac said.

"She was reviving by this time. I was crying, and she said, 'Mummy, I will pray for you.'"

It took ten days in the Intensive Care Unit (ICU) before an MRI scan was done. Isaac said she remembers being told the equipment at Mt Hope was not working properly at the time.

Kermika stayed in the ICU for another month.

"The reason they transferred her to ICU was because they saw the spot in her head and she was still having seizures," Isaac said.

But before the MRI was done, they diagnosed Kermika with herpes simplex virus. Then they said it was limbic encephalitis – a rare group of autoimmune condition characterised by inflammation of the limbic system and other parts of the brain.

Typical signs of limbic encephalitis include severely impaired short-term memory, and sometimes also confusion, psychiatric symptoms and seizures. It is thought to be caused by a reaction of the immune system to various stimuli such as cancers, tumours, infections, and generalised autoimmune disorders.

Isaac said Kermika was treated for limbic encephalitis, although her condition never improved. Now Isaac is doubtful of that diagnosis.

"She went into ICU a normal child, with a seizure," Isaac added.

After five months in a hospital ward, "She came out like this, with her spine twist."

In addition, during those five months, Kermika's joints seized and her body weakened, and she started getting bedsores.

"I am a truthful mother to my heart," Isaac said, however seemingly reluctant to continue.

"They say give her (physio)therapy. So we moving her foot one day. She come and break her femur (thigh bone)."

That was about two months ago. She said the break requires surgery. The leg snapped at an angle – almost the entire length of the bone.

"So when the bone snap, they say they need to put in steel. But they don't want to take chances. They say if she regains her mobility, they would have to break over her (thigh) and put the steel."

Ultimately, Isaac says, she does not know where to turn any more. Of course, she has tried to meet with experts and specialists with the limited resources she has.

"I need help. I need specialist advice. Because this has taken a mental toll on all (five) of them (Kermika's siblings) and me."

Kermika's father, Elton Regis, was shot and killed seven years ago in the area (he was not believed to be the intended target).

So Isaac has had to raise her children practically by herself. And, through this, she ensures her other children all get to school.

"I don't play with them things," she said.

They live on the upper floor of a two-storey house, which is accessible along a narrow pathway. Trips to and from hospital are particularly difficult.

When doctors can pinpoint Kermika's problem with a greater degree of certainty, only then will Isaac know how to proceed.

But she says she believes many doctors try to avoid them for two main reasons, one being the complexity of the case. She also firmly believes the amount of medication and the number of different types prescribed may have contributed to Kermika's deterioration, especially in the absence of any certain diagnosis.

But she says, "Anything is possible in this life. Where there is faith, there is hope. Where there is life, there is willpower to survive.

"I know my daughter is going to get up once she gets the right treatment."

What worries her most, however, is Kermika's welfare if something were to happen to her.

"It's already affected everyone in the family mentally. I'm afraid of what will happen if I can't take care of her."