MICKHELA ALEXANDER (NYLO INTERN)
FIVE-year-old Haleema Mohammed who is ailing with Beta Thalassemia Major - a blood disorder, and who has been accepted by a hospital in India to undergo a bone marrow transplant, was yesterday denied funding by the Children’s Life Fund Authority (CLFA) .
Her mother Kristal told Newsday yesterday, “I am very disappointed because I was expecting them to at least do something for the child. I understand the pain of other mothers who were denied funding.
I know what they are going through. To have a child in and out of a hospital, three to four times in a month, and get turned down because it is not a life-threatening disease, or because the diagnosis was insufficient and that a donor test was not conducted, is just disheartening. Trinidad does not even offer these types of transfusions. This should change. Once a patient is visiting a hospital more than usual, they should be given some preference in receiving funding to get the treatment required.”
She said the family is still trying to keep the September 4 appointment date for the surgery, which is costing $400,000, and friends and relatives are coming together to pool their resources in order to fund the transplant.
On Tuesday, attorney Gerald Ramdeen petitioned the High Court in San Fernando to compel the CLFA to respond to Haleema’s application with urgency. The judge, Justice Devendra Rampersad expressed concern over, what he described as, a lack of compassion in meeting and treating with the funding of life threatening illnesses involving children.
Yesterday the CLFA wrote to Ramdeen stating, “After careful consideration of the application and of the medical reports dated 12/05/2017 and 20/7/ 2017 from Dr. J Nunez and Dr. G John, the board of management, Children’s Life Fund Authority has rejected the application.”
The CLFA said Haleema’s application “contains little evidence of a definitive diagnosis of Beta Thalassemia Major...and furthermore it appears that the requisite testing for the donor has not been carried out, both of which may be required before the course of treatment can be appropriately selected. “Thalassemia is not considered to be a life-threatening illness as required by Section 19 (e) of the Act.” The board said its clinical assessments were based on other patients “with the same medical condition as further confirmed by the clinical meeting with consultant paediatricians and a haematologist on April 28 where it was agreed that Thalassemia is not a life-threatening illness and, with proper management, life expectancy extends well into adulthood.”
The CLFA said Haleema has been referred to the external patient programme unit of the Ministry of Health for their attention and consideration of assistance with funding.
Haleema’s father Hamil is a construction worker while Kristal is a housewife. The couple has three children.
They wrote to the CLFA on July 28 requesting assistance for the surgery at the Fortis Memorial Research Institute Gurgaon, India and Haleema’s three-month stay while recuperating.
Kristal explained when Haleema was 18 months old, she noticed something was wrong and took her to the doctor where she was diagnosed with the disorder in July.
She would have a high fever, cough and vomiting on a regular basis. She has been hospitalised on numerous occasions and is required to do blood transfusions on a fortnightly basis. Anyone wishing to assist the family can make donations to their First Citizens Bank Penal A/C# 2430155 or contact them at 331-4672, 710-1137 or 270-0707.