‘I feel stressed out’

Nadine Braham, a single mother of a 12-year-old blind child who is also diagnosed with sickle cell disease, speech impediment and autism, has been longing to go back to work and regain her independence ever since her son was born.

Since Tyrique Wellington was born and diagnosed with multiple illnesses, she has had to give up her job in the hotel sector and relocate from St Ann to Portmore, St Catherine, to be closer to the hospitals best equipped to care for him.

“I've not been working from 2009,” the former vacation nanny at FDR Resort & Spa in Runaway Bay told The Gleaner on Thursday.

“To be a stay-at-home mom with him, not working, is very challenging,” Braham admitted.

One of the main reasons she has not been able to seek employment is because Tyrique stopped speaking around age three and she has not been able to pay for him to attend a special needs institution or to leave him in someone's care while she works.

“He used to talk, and then after, he doesn't speak any more after age three/four. He used to ask for tea and call my sister's name and stuff. I don't know what's the cause,” Braham told The Gleaner.

She has taken the young boy to several doctors in search of answers since he stopped speaking, but they have been unable to make a diagnosis.

She expressed gratitude to her sisters, who have worked and ensured that the roof over her head with her child is paid for.

“With me here not working, my sisters really play a good part with him because when I don't have it to help him, they're the ones who try and help. They are the ones who pay the bills and see to it that everything is put together for me and him, but basically, I really can't depend on them for the rest of my life because they have families also,” Braham said.

She shares a painful story which numerous single mothers living with special needs children across the island silently suffer.

The concerned mom said that she got the first inkling that something was wrong with Tyrique when he was a baby, but she could have never imagined that it would have been so severe.

“The first sign of the [deteriorating] eyes [was] like couple months after he was born. He laid down on the bed and I [was] playing with him and I've noticed him from ever since,” she recalled. “One night, I saw like tears coming from his eye, but he wasn't crying, and I saw the tears were yellow. I said 'no' and I called my sister. She said I should take him to the doctor.”

Braham said that when she took the infant to Spanish Town Hospital, where he was born, she asked the doctor if he had tested the child's eyes after he was born.

She said the doctor informed that no such checks were done and if she wanted to get the boy's eyes tested, she would have to do it on her own.

Life began going downhill from that point, she said.

After taking Tyrique to a private practitioner in Papine, St Andrew, she was given a referral to the Bustamante Hospital for Children. There, she was told that a surgery would have to be performed to fix the issue, but she was later told in a follow-up visit that such a procedure could not help her son, who was now blind.

“I feel stressed out! Sometimes when I take him to the appointments, I don't know how I reach back home because I'm depressed. I'm crying each time I go and hear something different. I keep crying,” Braham said.

She said that worry begins to creep in weeks before scheduled appointments.

“I start fretting like three weeks before that ... because I don't know where to get that money to call a taxi. Sometimes I don't have the money,” she said, adding that friends sometimes assist her.

Taking the blind, autistic youngster on public buses and taxis is also another huge challenge.

“It's very challenging because I'm not working. Some nights, I don't even sleep. Sometimes I sit up and cry. I lay down and sit and cry regarding his situation,” admitted Braham, who has harboured thoughts of becoming a nurse.

“I think l'd want to be a nurse because of him. The situation got me thinking of being a nurse, and my friend always tell me, 'Yes, Nadine. You can do it. You can go and do it'.”

For now, Braham is pleading for financial assistance to cover the expenses for a second medical opinion for her son, whether locally or those overseas.

Cherie-Ann Small, manager of the Caribbean Institute for Health Research (CIHR) at The University of the West Indies, Mona, who brought the family's plight to The Gleaner's attention, said it is patients such as Tyrique who they want to help through the Jeremiah Global initiative, but the parents need some financial assistance to match what can be sponsored.

Small said there is an urgent need for Tyrique's hearing, speech and communication patterns to be assessed before he gets older and all is lost.

“CIHR has done a lot of work in helping patients with their medical needs and we do research that really informs government policy and so on, but the one group of people that we're extremely concerned about is our sickle cell patients. Because of the nature of the disease, you find that they're very economically challenged,” Small told The Gleaner.

Small said that there are other families with children suffering with severe cases such as Tyrique's. This includes a five-year-old who suffered a stroke.

“We want to be able to help him and his mother, to bring him to a stage whereby he can communicate with his outside world, where he can at least indicate this is what I need, ... bring him to a place whereby he can fend for himself or understand [the world],” she said.

ainsworth.morris@gleanerjm.com

How you can help

Persons interested in assisting Nadine Braham can call her at 876-414-6165 or 876-322-3991.