Parents struggle to support child with rare genetic condition needing expensive special supplements for life
Ras Al Khaimah: 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 acidemia type 1 while in their home state of Gujarat.
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 protein, and break down amino acids.
Since her body rejects normal food, Ilham is tube-fed only 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 with 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 in a hospital.
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 the seven years before that, she had the problems of not eating, walking or talking, her parents said.
“Other complications like acute respiratory failure developed earlier this year, worsening her health,” said Iftekhar, who works as 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 they did not have a consanguineous marriage and there was no family history of anyone having 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 said, she used to support her husband by doing part time work at a supermarket. “Now, Ilham needs full time attention. We cannot afford a home nurse and I am taking care of her all the time,” 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 he had verified that the father’s income is not enough for meeting the child’s medical expenses.
The family, who received interim support from the Indian Relief Committee and other social workers, has now sought the help of the consulate for further aid.
Vipul, who visited Ilham on Wednesday after a visit to the visa amnesty centre in Ras Al Khaimah, has offered support to the family through the Indian Community Welfare Fund.
Prasad said the limited support from the Fund may not be a permanent solution for the family and urged philanthropists to support them further.