–The saga of a young family’s struggle with congenital eye disease, blindness
RONELLA Jarvis gazes at the stretch marks on her baby bump, but the smile of an expectant mother that should naturally accompany that gaze is not there. It is stifled by the myriad negative thoughts suffusing her troubled mind.
“Will this one, too, be born visually impaired?” This is a question she has repeatedly been asking herself.

Tears well in her eyes, and as she looked in the direction of her sons, six-year-old Relon and four-year-old Roell, she felt a little relieved that her moment of sadness did not interrupt their little conversation and giggles. Of course, they cannot see her, because they are both visually impaired.
What could have caused both of her sons to be born with an eye condition remains a mystery for this young mother, even though she practically lives at the hospital in her quest for answers. “I used to carry them to town and to the eye clinic, and all they used to say is that is just a jerky movement; that is just an issue with the eye, and I just went with it,” Ronella told the Guyana Chronicle.

Then, just as she was about to accept that her boys were a little different, and to hope they won’t lose whatever little vision they had left, Ronella received a call from their teacher, Ms. Shellon Swaving.
Swaving is a special-needs teacher at the Wismar Hill Research Institute for the Blind, where the boys went to school during their formative years.
And what she had to tell Ronella was the last thing any mother would want to hear, as Relon, the older of the two boys, had confided in their teacher that what little vision he had in his left eye was now completely gone. This bit of news not only took the wind out of Ronella’s sails, but right back to the Linden Hospital Complex (LHC) in search of answers as to how she can save that left eye.

FINALLY, SOME HEADWAY
Relon was 12 years old at the time, and the sole ophthalmologist at the LHC, Dr. Rameeza McDonald, diagnosed him as having congenital toxoplasmosis.

“She said that there is a small percentage in my blood, and that I either contract it when the cats and dogs used to be around me, or I ate half-cooked food,” Ronella said.
When Ronella was diagnosed with the disease, she’d already had five children. She later had one more. The two older boys are already visually impaired, while tests done on the other children at Optique Vision Care in Georgetown, and at the Georgetown Public Hospital Corporation (GPHC), have shown that the last two children may also become impaired as they grow older.
Then, there’s her third son, who is also complaining of blurred vision, while her daughter is having problems seeing at night.

RISK FACTORS
As Dr. McDonald, the ophthalmologist who did the initial diagnosis explained, while the main host of the parasite is cats, those persons consuming uncooked meat or vegetables are also at risk of contracting the disease.
If contracted, it can stay within the person’s blood tissues for life. Said Dr McDonald: “The main host is the cat, and the cat would excrete the eggs of this parasite. And these eggs would come out in the faeces and be in the soil, and the human can get contaminated by playing in the soil, and without washing their hands, putting their hands in their mouths…”

AVAILABLE DATA
During her five years of practice at LHC, she said, she’s known of about 10 persons that were diagnosed with the disease. And while recent figures of the number of persons diagnosed in Guyana were unavailable to this publication, research has shown that in the United States alone, there are approximately 400 to 4,000 cases of congenital toxoplasmosis each year.

Optique Vision, a private optometry centre in Georgetown, conducted tests on Ronella’s children showed they all had the disease. Staff Member, Madonna said that an comprehensive eye examination was done on them which showed that most of the children’s vision has already gone a far way.

LACK OF SENSITISATION
But with all the help she’s receiving, Ronella’s frustration continues to grow as now that she knows more about toxoplasmosis, she can’t help feeling guilty that it’s because of her negligence that her children are now being made to suffer.
And while Ronella cannot recall ever playing with cats as a child, or being unhygienic for that matter, Dr. McDonald explained that all it takes is one contact with the parasite to be infected. As such, she is calling for more sensitisation programmes to be done, in an effort to edify the general public, especially pregnant mothers, about the disease.

“I think we can do some more; more sensitisation of the general public, to become aware of the effects of it,” Dr McDonald said, adding:
“Because, once it gets into your system, it is there for life. Every man, woman and child is at risk of getting toxoplasmosis.”

All vegetables and fruits also must be properly washed before consumption, and be properly cooked. All meat should be completely cooked, since the parasite lives in animals, especially pigs.
Persons are also encouraged to consume clean water, and to store it safely, since research has shown that mosquitoes and flies can pass on the egg of the parasite from the host to water sources.TREATMENT
Given that the disease cannot be cured, Dr McDonald explained that there are treatments to reduce the inflammatory process and the scarring of the macula. If the disease is activated, especially within a pregnant mother, she is given the necessary medication to reduce infection.
And while the ideal medication for treatment is not available in Linden, Dr McDonald has been using a substitute until the ideal drug becomes available.

THE CHALLENGES
For any mother, raising normal children can be a challenge. Therefore, for a mother raising several children that are differently abled, there are challenges that require that mother to possess insurmountable strength.
Ronella has proved to the world that she is very strong; strong enough for each of her six children. She fights day by day to make sure that they live a normal life, especially to be educated. This is the hardest fight she has ever had. According to the mother, there is much to be desired in the education system in Linden. What is most disturbing for her, is that Relon, who is now 15, and Roell, who is 13, are very intelligent. Both secured places at Linden’s top high school, Mackenzie High, when they wrote the National Grade Six Assessment. While Roell continues to be at MHS after being promoted to Grade Eight with a 77 per cent pass, Relon’s dream of writing the Caribbean Secondary Examination Council (CSEC) may have been dimmed, since the school does not have the facilities to accommodate his disability.

In fact, no educational institution in Linden has, and unfortunately, Relon is now at home, hoping for a miracle.
Their father, Ryan Waldron is peeved over the situation and the lack of support he said his family is receiving from the government and education officials in the region, since the boys’ education and their future are at stake.
The family, he said, is not in a position to provide for the boys all the days of their life, since they are very poor. “That is why we insisting on the education, because if them ain’t catch nutten, we have to look them after all the years, because they won’t be able to earn,” Mr Waldron said.

“So that is why we insisting that they get some kind of education, because we won’t be here all the time,” he added.
Other than selling homemade bread in the afternoons, the family has no other means of income, save the public assistance of $7, 500 each they receive for the two boys.

IN HIGH SPIRITS
But despite these setbacks, the boys continue to be in high spirits and are not allowing their disabilities to affect their everyday life. They both play blind cricket, and have represented Guyana on the national team as well.

Relon has dreams of becoming a teacher for visually-impaired children. “I feel that they don’t have enough teachers, and I will be able to help out in a great way,” he said. Roell is hoping to continue excelling at school as he did at his first end-of-term examination.
“The children feel that because I get this eye problem, I can’t do good,” he said, adding:
“And the teacher said that she would automatically put me over, because the pass mark is 55 per cent; but I have to get 65 per cent.
“And I said I will pass both 55 and 65 per cent.”

Dr. McDonald is encouraging all parents living in Ronella and Ryan’s shoes to continue fighting the good fight with their children, and reminding their children each day that they can be whatever they want to in life.
“They need to be reminded that the child is not his or her vision, and there is more to the child,” she said, adding:
“They can hear, they can walk, they can talk. They need to be encouraged to work with these other abilities of the child; read to them, speak to them more often. They must be encouraged not to give up and that and it is not to end of the world.”