Great article in the National :‘I never even expected to see my daughter walk’: specialised care gives UAE girl, 6, a new life
AL AIN // Hazza Echtibi was delighted when his daughter Shaikha threw a tantrum about having to go to school. That morning battle is one many parents could well do without, but for him it brought a degree of normalcy he could barely have hoped for in his only daughter. “I am speechless. I can not find the words to explain how happy I am,” said Mr Echtibi, a father of four in Fujairah. Emirati Shaikha, 6, was born with a congenital disorder that meant she could not walk independently until a few months ago and attending school was out of the question. All of this has changed thanks to dramatic progress in recent months because of special care. It means she can now walk unaided and is attending classes at a special-needs centre to prepare her for a local primary school this year. When she was born at Dubai’s Latifa Hospital, Shaikha’s parents were told she had tracheomalacia, a weakening of the trachea that prevents her from eating, breathing or speaking normally. At only three months old, Shaikha was admitted to a hospital in London for treatment. Very few children born with her condition live beyond their first year because of complications such as pulmonary infections. But after receiving several corrective operations in the UAE and abroad, Shaikha, was admitted at ProVita’s Abu Dhabi centre at the age of two. She relied on a ventilator and had mental setbacks. Shaikha struggled to interact with people, was unable to make eye contact and staff at the centre frequently found the little girl rocking herself back and forth. Sensory difficulties meant she was unable to walk and was afraid of making basic movements. But after physical, occupational and speech therapy, Shaikha – who was transferred to ProVita’s centre in Al Ain’s Al Foaa district seven months ago – has made significant developments. Just three months she began to walk unaided. She has also made other developments, such as putting on her own shoes and dressing and grooming herself. She has started classes at the Zayed Higher Organisation for Humanitarian Care and Special Needs centre, which is preparing her to begin at a mainstream school in a few months. “I never even expected to see my daughter walk,” said Mr Echtibi, 31. “Whatever I say, I cannot do ProVita enough justice.” For him, Shaikha is just like any other girl her age. “It is not like I hope for Shaikha to be normal like any other girl. I am sure,” he said. “Inside I believe she is just like any other girl.” Michael Davis, chief operating officer at ProVita, said Shaikha was the apple of everyone’s eye at the Al Ain long-term care centre. Her love of walking means she is often found trailing behind staff at the centre with her Hello Kitty book bag. “She helps deliver supplies to the patients,” Mr Davis said. “It is not uncommon to see her walking behind the cart for two hours at a time. She just walks around. It is fun for her.” Attending a mainstream school will only build on her growing independence, he said. “The goal for her is to catch up developmentally to her age as best as possible,” said Mr Davis.“But what is most important is that she develops a peer group and feels comfortable around people her own age.” ProVita caters mainly for children, some born with degenerative disorders such as multiple sclerosis, some with congenital diseases and others who have been victims of accidents, who will never fully recover and need long-term care.