Living proof of importance of UAE's long-term care centres

Sheikha cannot speak, but that did not prevent her from expressing her happiness while celebrating her fourth birthday with her loved ones.

Sheikha, 4, celebrates her birthday at the ProVita centre with her carers and family. She lives at the centre because she cannot speak, breathe or eat properly and her family feared they could not give her the medical attention she needed at home. Fatima Al Marzooqi / The National
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ABU DHABI // Four-year-old Sheikha cannot speak, but this did not prevent her from expressing her happiness while celebrating her birthday with her loved ones.

The young Emirati suffers from a congenital disorder called tracheomalacia, a weakening of the trachea that prevents her from eating, breathing or speaking normally.

Her illness means she has to live at the ProVita centre, which provide long-term care to the chronically ill. Her family visit frequently - and on her birthday, Sheikha's smile alone was more than enough to bring joy to her father, Hazzaa.

"She felt our presence, and for us, that's more than enough," he said. "We visit her at least four times a week. It's important to us for her to know that although she's not at home, we're always there for her."

Sheikha is proof of the importance of centres such as ProVita.

After receiving several corrective surgical procedures both in the UAE and abroad, she was admitted as an in-patient at the age of two.

Very few children born with her condition live beyond their first year due to complications such as pulmonary infections. Sheikha previously had to breathe through a ventilator and still eats through a tube connected to her stomach.

"We found it very difficult to take care of her at home," Hazzaa said. "Sometimes situations would arise that we wouldn't know how to handle because we're not doctors.

"She needed a dedicated place that could take care of her around the clock but, at the same time, we didn't want to keep our little daughter in a hospital."

Sheikha's doctors say she has significantly improved since she entered the facility, including being weaned from her ventilator over the past six months. Dr Ridene Fatma, a senior physician, said there was even a possibility she would be able to speak one day since her vocal cords were not damaged.

She added that notable improvements were often made after a child hits the age of five.

"When Sheikha first came to us, she couldn't even sit up and was afraid to develop relationships with people," Dr Fatma said. "ICUs focus on medical issues and cannot offer rehab. She had received no physical or occupational therapy. But with the help of rehabilitation, she can now walk, has friends and enjoys life, like every child has the right to."