Mother's Day appeal for disabled toddler: Help Sarai thrive

Mother’s Day has been quite different for 27-year-old Angeli Rambally over the past four years. The mother of two spends her days providing round-the-clock care for her disabled daughter, often leaving her overwhelmed and emotionally drained. Her husband, 29-year-old Ricardo Rambally, works as a machine operator and is the sole breadwinner for the young Carapichaima-based family.

They are in desperate need of financial assistance to provide their four-year-old daughter, Sarai Rambally, with the basic skills and support she needs to gain some level of independence.

Sarai is currently under the care of the Paediatric Neurology Clinic at Eric Williams Medical Science Complex as well as the Neurosurgery Clinic at San Fernando General Hospital.

Her diagnoses include hydrocephalus with a VP shunt in place, epilepsy (currently controlled with monotherapy), a history of infantile spasms treated with steroids, global developmental delay, and visual impairment. An ophthalmology assessment has confirmed she is also blind.

Sarai’s condition requires a comprehensive, multidisciplinary approach to care. She faces several medical and developmental challenges, including progressive orthopaedic complications such as contractures and scoliosis, which can cause her significant discomfort.

Psychologically, due to her inability to communicate and her chronic health issues, she and her family need support from mental health professionals. Sarai also suffers from feeding difficulties, gastro-oesophageal reflux disease, and chronic constipation. She is at risk of aspirating food, which calls for specialised input from both gastroenterologists and respiratory specialists.

Regular, intensive therapy is crucial to prevent her condition from deteriorating further. Sarai needs physiotherapy and speech-language therapy at least three times per week, along with occupational therapy once a week.

She must be closely monitored by a network of specialists, including developmental and community paediatricians, paediatric neurosurgeons, neurologists, dieticians, psychologists, ophthalmologists, palliative care providers, and potentially ENT, orthopaedic, respiratory, and surgical specialists. In addition, she requires specialised mobility equipment such as an adaptive wheelchair with trunk support, a modified car seat, and a feeding chair.

Respite care is also essential for the family’s well-being, as Sarai’s care is intense and unrelenting. Angeli cannot hold a job, as Sarai requires 24-hour supervision.

"My pregnancy was pretty normal until the last part, around 30 to 33 weeks. That’s when I started to notice something might be wrong,” Angeli explained. “I did a private ultrasound around 33 weeks, and that’s when I found out there were issues with the baby."

Asked about her daily routine, Angeli described it as a nonstop, 24-hour job, with little to no rest. Her daughter is unable to move independently and this, she says, makes the experience physically and emotionally exhausting. Despite feeling overwhelmed at times, Angeli remains committed to her daughter’s needs. As for the future, Angeli holds on to hope.

"There’s a chance she may gain some independence, like holding up her head, sitting, or even walking. But she’ll need extensive therapy. That’s why we’re trying to raise funds to cover a few years of therapy."

Therapy is the family’s top priority, starting with physiotherapy, followed by speech and occupational therapy. Sarai cannot speak.

"Most of the time she cries, and we have to guess what’s wrong because she can’t communicate."

The cost of care for the family is staggering.

"She’s mostly formula-fed and wears diapers all the time. I haven’t calculated a daily cost, but she drinks about six to ten bottles a day and eats a little. She lies down most of the time and can’t hold up her head, so she often chokes on food and spits it out. She uses a lot of diapers about a bale and a half per week."

Rambally and her husband have looked into therapy through the Caribbean Kids and Families Therapy Organisation, in Chaguanas.

"I had a phone evaluation with them. The cost for a basic evaluation session is around $400-$500. An in-person evaluation is anywhere between $1,700 and $2,000."

She said Sarai has never had therapy before, and as such, the centre cannot estimate how many sessions she will need per week or how long. Angeli says the family is hopeful Sarai will have notable improvements in about four years of consistent therapy.

"Our hope is that she might be able to sit up by then – even just being able to hold her head up would be a major achievement."

She said although public hospitals do offer physiotherapy, the limited frequency is a major drawback.

"Her doctor recommends two to three sessions per week, but public hospitals can only provide therapy once every two to three months. That’s not enough. I do what I can at home, but she needs professional help. The public system just does not have the capacity to offer regular therapy for special-needs children."

Asked if she would accept therapy through the public system if it were available, Angeli responded without hesitation, “Definitely. If the public system could provide therapy as often as she needs it, I would absolutely take it.”

Balancing the demands of caring for Sarai while raising her five-year-old son has been another challenge.

"I manage. My son goes to school, and he’s back around 3 pm. During the day, I juggle housework and care for Sarai. Once he’s home, I shift my attention to him. Because Sarai doesn’t move around or do anything on her own, it gives me a little more time to focus on him, but it’s still a lot to handle."

Asked about her support system, Angeli is candid: "That’s a main issue – most of my relatives are busy with their own lives. My mom lives far away, but I’m managing."

She says the only way to truly understand her plight is for someone to try to put themselves in her shoes.

"I think mothers, especially those with special-needs children, will understand. But my daughter’s situation is different. She is blind and cannot move. Most days, it’s hard. I don’t have support or guidance from family, and it’s incredibly lonely."

Nothing there are so many special-needs children, she hopes people can begin to understand the pressure and emotional toll it takes on parents with special-needs children.

"If anyone can offer advice or support, I’d be so grateful. You really can’t understand what it’s like unless you live it.”

Despite everything, Angeli remains cautiously optimistic about the future.

"I’m hopeful about the current UNC government. I’ve been hearing some positive things. For example, the Couva Hospital – my daughter was placed on a list there. It was designed with special-needs children in mind. I’m really hoping they follow through. Maybe she’ll finally get the help she needs."

Still, she emphasises the urgent need for systemic change. "There’s very little in place for children like Sarai. And in this economy, surviving on one income is almost impossible."

As for daycare, it’s simply not an option. "I could never put her in daycare – she can’t speak or tell me if something is wrong. And in today’s world, it’s hard to trust anyone with your child."

Anyone interested in supporting the Rambally family can make a donation through Ricardo Rambally’s RBC savings account: 110000004237345.

The family can also be contacted at (868) 752-8394 or (868) 755-6547 for more information.