This is how Zaida Palm, mother of four-year-old Raqeeb who suffers from a rare condition known as aplastic anaemia, describes her family’s plight.
When the little boy does catch a cold, he has to be rushed to the hospital for tests.
“We constantly have to keep an eye on his temperature. It should not exceed 37.5ºC,” Zaida said.
Aplastic anaemia occurs when the body stops producing sufficient blood cells. Raqeeb was diagnosed with the condition late last year, and will have to undergo a bone marrow transplant as soon as possible - before the disease becomes fatal.
However, the family have yet to find a suitable match for the little boy within South Africa, in spite of efforts by the Bone Marrow Registry to locate a donor.
The family are now turning their hopes to international donors - with six potential matches being located internationally.
In March, the family launched a crowdfunding effort to raise R100000 to help Raqeeb get an international donor.
However, if they’re unable to raise the amount, Zaida said she would have to fork out about R1million to find a matching donor in the US.
Since his diagnosis, Raqeeb has undergone two bone marrow biopsies, which involve a patient’s solid bone tissue being tested for anything amiss in the blood cells.
He also underwent a series of blood transfusions to suppress his white blood cells.
Describing the process and Raqeeb’s mood before and after transfusions, Zaida said her son was “a happy chap” after a transfusion.
She described him as playful, energetic and a joker in the house.
Doctors at the Red Cross Children’s hospital have said Raqeeb’s blood system is operating at only 20% capacity, and he wasn’t making enough blood to survive.
Back a Buddy, a crowdfunding campaign set up to help the family reach the R100000 target, has managed to raise R2822.79 to date.
Zaida said the family had pegged their Back a Buddy campaign at R100000 - even though the worst-case scenario asked for R1m - “so that people are comfortable with donating a low figure if that is all they can afford. As time goes on, the campaign target will be raised.”
In March, the courageous boy underwent an Anti-Thymocyte Globulin (ATG) infusion, with the results indicated three months later.
As the third month winds down since the treatment, Raqeeb’s health has remained stagnant, Zaida said. “The waiting is killing us, especially knowing there is nothing you can do. It’s quite intense at home, we can’t wait to find out.”
Terry Schlaphoff, deputy director of the South African Bone Marrow Registry, said before conclusions were drawn that there was no match for any patient, all avenues need to be explored.
“This will include bringing the patient’s tissue-type to the desired level to see if there are any matches. Once that is done, the local and international databases will be searched for possible matches for a patient.”
Asked what options Raqeeb’s family have now, Schlaphoff said: “Following the advice of the doctors treating the patient is most important.”
She warned that the costs of testing and bone marrow transplantation were high.