Ammon News - By Banan Malkawi
AMMONNEWS - Amal Ghabayen - In a race with time, Laith and Leen Qteishat's parents are seeking to find treatment for their children who suffer from Thalassemia before the kids reach the medically critical age of 25 years old, which is often when severe complications or death results from the disease.
Laith (8 years old) and Leen (10 years old) have been spending their childhood between hospitals and labs after developing the disease genetically inherited by their parents, both of whom are carriers of the defective gene, causing a blood disorder in which the body makes an abnormal form of hemoglobin, resulting in excessive destruction of red blood cells, which leads to anemia.
The parents had tied the knot before enforcement of the compulsory pre-marital screening condition for marriage in Jordan.
The father Abu Laith told 'Ammon News' that his family's ordeal began when Laith was two years old and began to suffer from difficulties moving his legs. Several medical examinations later, it was revealed that the child suffers from Thalassemia, leading the parents to also conduct tests for the eldest daughter, Leen, who was only four years old then.
Thus began the family's journey to seek treatment, unaware of the massive physical, mental and financial burdens they would bear.
What is described as a treatment is merely an attempt to keep Thalassemia patients alive, the father said, consisting of continuous blood transfusion therapy every three weeks to raise the percentage of iron in the body, which may cause complications including diabetes, enlargement of the spleen, heart weakness and failure.
To reduce complications, the Ministry of Health had adopted a treatment that pumped medications through a needle into the body for eight hours a day, a method that Abu Laith considered devastating to the children's well-being.
The pump, which often broke down, according to Abu Laith, physically and mentally exhausted the children, causing the father to resort to alternative medications used in developed countries, which consisted of an oral iron chelation drug.
The Ministry of Health had refused to allow importation of the drug then, despite the fact that a pharmacuetical production company had obtained approval from the Jordanian Food and Drug Administration, but did not gain accreditation from the Ministry, leading the father to resort to smuggling the drugs from Switzerland at a cost of JD 1,600 per month for each child.
A year and tens of thousands of dinars later, the father, heavily indebted, admitted publicly on-the-air on a radio that he smuggles the medications, prompting the Ministry of Health to allow the drug into the kingdom and provided it to Thalassemia patients in lieu of the pump.
After a long struggle in finding a permanent treatment for his children, the son Laith received a Hashemite Royal Makruma to undergo a allogeneic hematopoietic transplantation at Al Hussein Cancer Center after securing matching allogeneic hematopoietic cells. Yet the surgery was not successful after Laith's body rejected the transplant.
The surgery's failure did not deter the parents from continuing to look for treatment. Upon doctors' recommendation, Abu Laith and his wife decided to have another child, in hopes that the third child would be healthy.
It turned out the third child, although not suffering from the disease, was a carrier.
Abu Laith and his family, like many others conflicted with the disease, can only wait for the opening of a allogeneic hematopoietic transplantation Center in the kingdom, which was supposed to be established in 2007.
On his part, Head of Al Hussein Cancer Center, Dr. Mahmoud Sarhan, told Ammon News that postponing establishing the transplantation center was a result of efforts to integrate it with Al Hussein Cancer Center expansion project, expected to be completed in three years.
Sahran added that the center provides medical services free of charge to all citizens, noting that the center enjoys high level capabilities and specialization in this field.
Sarhan stressed the need to build the allogeneic hematopoietic transplantation bank, considering the effectiveness of the procedure, which has become the most successful in treatment a number of diseases world-wide with a 95 percent success rate.
He noted that the results of allogeneic hematopoietic transplantation are only successful if the cells are donated by a person closely related to the patient, such as a parent or sibling.
The transplant bank is expected to become a resort to many citizens who were previously unable to pay for such expensive treatments.
On its part, the Ministry of Health formed a specialized committee tasked with regulating allogeneic hematopoietic cells and making use of them through medical storing banks, and are working on formulating the conditions and regulations for the process, the Ministry's spokesperson Hatem al Azra'i said.
The committee, al Azra'i said, had contacted specialists on various medical fields, in an effort to establish a system to regulate this medical practice. The committee has concluded a draft of the regulations in accordance with Articles 3 and 72 of the Public Health Law, to regulate obtaining, storing, transporting, and transplanting allogeneic hematopoietic cells.
Over 1,100 people are afflicted with Thalassemia in Jordan, ranging between moderate and severe (alpha- and beta-) forms of the disease, in addition to over 200,000 Jordanians who are carriers of the disease, President of the Jordanian Thalassemia and Hemophelia Association, Dr. Bassem Kiswani, told 'Ammon News.'
Kiswani added that the cost of treating Thalassemia exceeds JD 10 million per year for patients who require over 25,000 blood units a year.
Photo: Laith, Leen, and Karam Qteishat.
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