The Children's Life Fund (CLF) has rejected the request to fund the surgery of five-year-old Haleema Mohammed who suffers from Beta Thalassemia - a blood disorder.
Now the family has to raise the funds on their own to cover the expenses for the trip and treatment in India.
In a letter sent on August 15 to attorney Gerald Ramdeen, who is providing legal advice to the Mohammed family, the CLF stated that Haleema's illness was not “life threatening” which the CLF requires in order for there to be surgery.
“The Board has concluded that Thalassemia is not considered to be a life threatening illness, as required by Section 19 (e) of the Act. This position of the Board is based on clinical assessments of other patients with the same medical condition, as further confirmed at the clinical meeting held with consultant Paediatricians and a Haematologist on April 28, 2017, where it was agreed that Thalassemia is not a life threatening illness and with proper management, life expectancy extends well into adulthood,” the chairman of the CLF board Dr Martiza Fernandez stated.
Doctors in India are willing to perform the surgery which is scheduled for September 4.
Speaking with the Express on Thursday, Haleema's mother Kristal Mohammed said: “It is very disappointing to hear that our application was rejected. We were expecting some kind of help from them or the Government. Her iron levels is over 2,000 which is very high. This amount of iron build-up is dangerous. They (CLF) are saying it is not life threatening but to maintain and manage blood transfusion for a little children is hard. It is hard for them to go through this all the time and some have bad reactions and others don't.”
She said her daughter require periodic blood transfusions and must constantly visit doctors.
The surgery, treatment, accommodations and flight will cost the family $454,000. The family has been able to secure $208,000.
Mohammed said they are planning to have a fund raising a bar-b-que. However, they are hoping that through kind-hearted people will also donate the money.
The family resides at Mohess Road, Penal and Mohammed is a housewife. Her husband is a construction worker.
Mohammed also said the family will no longer proceed with legal action.
“What we wanted was to get some kind of answer on whether or not they will help us. It is a desperate situation for us. We are not wealthy people. I know if we proceed somewhere down the line, this may help maybe another person in need of this type of surgery but we are running out of time and we have to make arrangements for now. We cannot put my daughter through the ups and downs of legal action,” she said.
The letter from the CLF states that Haleema has been referred to the External Patient Programme Unit at the Ministry of Health for consideration of assistance with funding.
Many on social media have expressed their outrage that the Children's Life Fund had decided not to fund the surgery.