8-year-old girl who looks half her age needs help to survive
CHILD WITH RARE GENETIC CONDITION NEEDS EXPENSIVE SPECIAL SUPPLEMENTS TO LIVE
Little Ilham will turn eight in December, but she looks only half her age. Her weight is just 12kg and she is just 99cm tall.
The second child of Indian expats Iftekhar Esmail and Asma, Ilham has not had solid food since her seventh month, when she was diagnosed with glutaric academia type 1 back in their home state of Gujarat in India.
With worldwide prevalence of one in 100,000 births, it is a rare genetic disorder in which the body is unable to process certain types of proteins or break down amino acids.
Since her body rejects normal food, Ilham is only tubefed with special formula milk prepared from four types of food supplements imported from the US. They cost the family Dh3,500 a month.
Instead of toys and books, the room of Ilham, who moved to Ras Al Khaimah where her father found a job in 2011, is now full of medical devices.
Her life is supported on a ventilator, oxygen cylinder, tracheostomy tube, trach pads and ties, suction machine and feeding tubes in her nose and stomach that makes her room look more like an ICU.
Though now at home, Ilham is currently under the treatment of six specialists at Tawam Hospital in Al Ain, the fourth hospital where she sought treatment, Ilham was admitted for over four months since March 15 in Tawam Hospital, including 51 days in ICU.
In her seven years of life before that, she has not been able to eat, walk or talk, her parents said. “Other complications like acute respiratory failure developed earlier this year, worsening her health,” said Iftekhar, who is a storekeeper with the Federal Electricity and Water Authority.
The new complications have added to the cost of her care. “Now we have to spend around Dh4,700 for her powders and for these medical devices every month. Since it is a genetic disorder, it is not covered by insurance,” said Asma.
The couple said theirs is not a consanguinous marriage nor do they have a family history of such a disorder. With two other daughters aged 11 and two, who are normal, the couple is now struggling to make ends meet.
Earlier, Asma supported the family by working at a supermarket. “Now, Ilham needs full-time attention. We cannot afford a home nurse and I am taking care of her,” she said.
Sreedharan Prasad, a member of the medical committee volunteers of the Indian Consulate who took up the family’s plight with the Consul General of India in Dubai Vipul, said the father’s income is not enough to meet the child’s expenses. Vipul has offered support through the Indian Community Welfare Fund.
Prasad said the limited support of the fund may not be a permanent solution and urged philanthropists to support them further.