By Utamu Belle
While the past few years have been especially challenging for 33- year- old Linden mother of 7, Ronella Jervis, she stunningly manages to beat the odds, overcoming daily challenges associated with caring for three of her children who are visually impaired. Jervis, who lives with her husband and children at Blueberry Hill, Wismar, Linden first found out that her eldest son, now 16 had the disease Congenital toxoplasmosis, while he was just around 13 years old.
She would later find out the heartbreaking news, that another one of her sons, now aged 14 and her daughter, now 6 years -old also contracted the disease. “After getting my third son, I found out about the disease”, Jervis related. Congenital toxoplasmosis is a disease caused by a protozoan parasite, toxoplasma gondii, which is transmitted from mother to fetus causing visual, hearing, motor, cognitive and other difficulties with the child. As Jervis would relate, it started off with a “jerking” movement of the eyes, then impaired vision. “We already knew they had an eye problem, but we said probably glasses would rectify it. We thought they just had jumpy eyes, until the eldest one get blind in the left eye completely”, she explained.
When the now 16-year-old complained to his teacher of not being able to see properly in his left eye, it prompted a hospital visit, followed by the diagnosis. She later learned that she had a strain of the disease which was transmitted to her children. “The doctor said it’s likely the first, second and fourth children would be affected by the disease”, Jervis said. However, according to Jervis her daughter’s vision has not been as badly affected as her sons’. One has gone completely blind while the other is partially impaired, a situation, which she was told cannot be rectified. “The doctor said it is active like when you’re around cats or if your meat ain’t cook properly or if you been in the interior. I does still find it hard to understand where I got this disease from. And my second boy, he loves animals, so it’s hard for him”, she said.
Achievements and challenges
Despite this, the boys are high achievers, as Jervis is a firm believer that education is a must for her children, the youngest being 6 months old. Both, her 16 and 14 year old sons were awarded places at the leading high school in Linden, the MacKenzie High school, after sitting the National Grade 6 Assessment Examinations. She said too that her second son, who attended the Blind Society Unit based at the Wismar Hill Primary in Linden, received necessary assistance with writing his entry exams. Life at high school has been difficult for both boys. “When it comes to education, the Blind Society Unit, they really help out. The teachers are amazing. When they wrote the exams the Ministry sent a reader and a writer because their vision was very weak. But the secondary system, it is really really hard”, Jervis said.
It became so hard that her 16-year-old son recently dropped out of school in Grade 10 (Form 4) since, as she explained he was not receiving the special attention he required in school. “He’s not attending MacKenzie High right now because it’s pure hopes. With all the SBA’s (School Based Assessments) and there we’re much teachers at the Blind Unit at the time. The teachers weren’t regular and he wasn’t getting all the notes and so on”, she indicated. On the other hand, Jervis said things are different for her other son who receives tremendous help from his school friends. Despite his condition, she said he manages to walk to and from school. “He does walk with faith. I does say whatever he do, he do it by faith. His vision is very poor. So it’s really hard”, the mother said. She explained that there are issues catching the boat from Wismar to MacKenzie, as he has difficulty boarding the boat, he would have to sit at the boat’s bough. “Some people would tell him to get up because they don’t understand his condition”. “People would tell him to look where he’s going,” the concerned mother added.
No Support
She is now contemplating sending her older son back to school with the help of the Welfare Department. “I would send him back, even if it’s not at MacKenzie High because I want him to finish his secondary education. They now have a Special Needs Welfare so if they attach a teacher to him I have no problem, because they don’t have any teacher placed at the Secondary school that could help them”, Jervis said, as she outlined that sending her son to the Blind Society in Georgetown will be too costly. “We ask long for a bus that could bring them and carry them because they get bullied a lot. People would beat them up a lot when they were small. And to say who did it, they can’t say. People does take advantage of them a lot because of their condition”, Jervis lamented.
She also pointed to the stigma attached to the situation as she noted that people would smirk at her for having blind children. Despite this, she noted that she is proud of their achievements. Jervis is telling her story to spread awareness, with the hopes that other families in similar situations would be able to receive the necessary support. She said she has made several appeals via the media but has not received much help, noting that she hopes more could be done for persons living with disabilities. Jervis said it has been challenging to acquire public assistance after being told by an official that she was not eligible.
“That is why I make a claim whereby I can get public assistance. Because they’re condition is just like a disability. People does got to do things for them”, she noted. “My children are growing and I does assist them in any way. I’m asking on the part of the Government, to assist at least when it comes to education. I’m asking for the Government to look out for children with disabilities, whether they attend a normal school or the disability school, whereby they could get a normal education just like everybody else”, a teary-eyed Jervis said. Both of the affected boys dream of becoming musicians and even recorded a viral musical video which they prepared in the spirit of this year’s Linden Town Week event. (Guyana Times Sunday Magazine)
