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No State $ for Haleema’s surgery
Kristal Mohammed now has to find $400,000 in just over two weeks for her four-year-old daughter Haleema to undergo an urgent bone marrow transplant in India after the Children’s Life Fund Authority rejected her application yesterday.
Haleema was diagnosed with Beta Thalassemia Major, a blood disorder which reduces the production of haemoglobin. She is scheduled to undergo surgery at the Fortis Memorial Institute for Allogeneic Transplant in Gurgaon, India, on September 4.
On Tuesday, Mohammed filed a lawsuit challenging the delay by the Authority to consider her urgent application.
The application was filed in June and the Authority stated that it would take between one and three months to consider her case. Mohammed’s attorney Gerald Ramdeen argued that the lengthy period for considering the case was unreasonable, considering that the Authority had determined previous cases within a week.
The board effectively conceded the case and committed to reviewing the case and respond by midday yesterday.
In a letter addressed to Ramdeen, the Authority’s chairman Maritza Fernandes stated that “after careful consideration of the application and the medical reports dated 1/05/2017 and 20/07/2017 from Dr J Nunez and Dr G John, the Board of Management, Children’s Life Fund Authority had rejected the application.”
The board concluded that Beta Thalassemia Major was not considered a life-threatening illness as required by Section 19(e) of the Act. This position of the Board was based on clinical assessments of other patients with the same medical condition. Fernandes said it was confirmed and agreed at a clinical meeting with consultant paediatricians and haematologist on April 28 that once managed properly, life expectancy can extend into adulthood. She added that the application for funding contained little evidence of a definitive diagnosis of Haleema having the illness and it appeared that the requisite testing of the donor was not carried out, which may be required before treatment.
Mohammed told the T&T Guardian that she was disappointed and will meet with Ramdeen to consider further legal action.
She said those who made the decision to deny her daughter of a better life do not understand the pain and stress Haleema goes through daily.
“They don’t understand because they don’t see when she gets blood transfusions. Just Tuesday, Haleema went for blood and the doctor said she has to come back Thursday because her blood count was really low. Haleema missed this term from school because sometimes she has to get transfusions two times a week. If it is critical and she cannot get blood, her organs could fail and she could die,” Mohammed said.
Since Haleema’s story was highlighted by the T&T Guardian and CNC3, citizens have been sharing prayers and raising funds. So far the family has raised $160,000 and Mohammed said if the Authority provided the balance, they would be satisfied.
Ramdeen said the Children’s Life Fund Act was created to facilitate saving the lives of children who are unable to access life-saving medical treatment in this country.
“This is a child whose iron builds up in her blood is currently, almost at 2500 when the normal level is between seven and 140. What you have is persons sitting in their glass offices and determining these applications without any reference to the reality of what the child and her parents are facing on a daily basis.
“Only yesterday, this child waited in excess of five hours for blood at the San Fernando Teaching Hospital. That is to tell you the ordeal that this innocent five-year-old child is being put through and those that administer the Children’s Life Fund seems oblivious to that reality or simply do not care,” Ramdeen said.