“Come to mummy nah, come, come,” Amanda Richards encouragingly told her daughter yesterday.
A few feet away, four-year-old Gabriella Cheewah was trying with all her might to get there but she needed the support of her father to even stand upright, to balance herself and to take that first step.
Tiptoeing and with her father’s hands hovering around her, ready to grab her tiny body if she fell, Gabriella finally made it.
“Yay!” mom and dad shouted in unison.
That cheer drew a big smile from Gabriella, who tilted her head back and cheered along with them.
Gabriella’s slow progress was not her fault.
She has microcephaly as a result of her mother contracting the Zika virus while pregnant in 2017. Microcephaly occurs when a baby’s brain does not develop properly during pregnancy or has stopped growing after birth, which results in smaller head size.
It’s why Gabriella has trouble walking, gripping things, speaking and even holding her head up.
Her father’s hope that his daughter would need less support at her age was a reasonable one, as she was constantly getting physiotherapy sessions courtesy the Lady Hochoy School and through the Zika Foundation. However, since the pandemic began the sessions stopped.
“Lady Hochoy close because, remember, it’s a school, so since school close that stopped,” Richards told Guardian Media.
The private sessions which were sponsored by the Zika Foundation were also on hold for over a year, as some clinics had put a halt on in-person care.
While Gabriella’s parents do whatever exercises they can at home with her, they are frustrated that her progress has been halted.
“The therapy was very aggressive, we have goals for her and we thought by now she would have been at least holding her own bottle. We are very concerned for her because usually, most things happen at the early part of her life, so we’re worried it will hamper her in the long run,” Richards said.
The concern is the same for Kavita Ragoo. Her four-year-old son Davyn has had his sessions halted as well. But she’s worried that he will have lost all the gains he made in the past.
“When COVID hit, that was it. It’s really hurt us a lot because Davyn started off so well in the therapy and then nothing has been happening in over a year, so I’m afraid when we start back, we’re going to start back at square one.”
Access to therapy aside, Ragoo said she was reluctant to take Davyn out of the home during the pandemic, as he is especially susceptible to viruses given that his mouth is constantly open.
But some help is on the way.
Guardian Media reached out to Minister of Social Development and Family Services Donna Cox, who said, “While therapeutic services are under the purview of the Ministry of Health, the Ministry of Social Development and Family Services is planning to offer therapeutic services to children with disabilities at the National Therapeutic and Resource Centre for Persons with Disabilities in Carlsen Field when the refurbishment works are completed and the facility is reopened.”
Cox estimated this will be at the end of October. The services provided will be aqua therapy, occupational therapy, physical therapy, speech and language therapy, behavioural therapy, music therapy, art therapy and cognitive behavioural therapy – all free of charge.
It’s welcomed news to the parents, who told Guardian Media this will be one less thing to worry about because they still have to find money to pay for equipment such as special wheelchairs, bathing chairs, foot braces, walkers and in some cases, hospital beds.
Zika Foundation chair Dr Karen Sohan yesterday told Guardian Media there is no national policy care and what the children receive is dependent on what their families can afford.
“During the COVID era we need to develop online resources for the special needs children, which should include webinars where physical therapy can be accessed online and at home. The children are now four to five years old and they need to be outfitted with orthotic devices but these things are expensive.”
In the meantime, the children continue to put up a brave fight.
“We want what every parent wants for their child, to have a family, to be able to take care of themselves,” Richards said at the end of the interview.
For that to happen, they say society needs to remember their battle while the war on COVID-19 continues.