“As a mother, watching your son undergoing that kind of pain is insurmountable, the most you can do is pray that when you call the hospital looking for the medicine you will find it,” she added.
For Lucy her first experience with her son’s condition was when he was only nine months after a minor slip in the bath but like any other mother she simply massaged the area and soon forgot about it.
Then when Simon was one year he fell down the stairs and that is when the reality dawned.
Lucy explained to Capital FM News that on the fateful day she got home to a little boy in tears, “Mum chichwa, mummy chichwa uma as he held his head was all he could say between his sobs.”
“I then decided to take him to hospital and get a doctor to have a look; the doctors insisted that he was too young to have a Computed Tomography (CT) Scan following my persistent pleads that they check his head.”
“When the doctor there refused to do the scan I took him to MP Shah where they agreed and when the results came out, all I saw them do is take my son into theatre and I immediately began panicking.”
“After the longest one hour of my life the doctor came out of theatre and told me that my son had an internal injury in the head and blood was metres away from his brain which would have been fatal. Soon after that the doctor sat me down and broke the news of my son’s bleeding disorder and called it Haemophilia,” she further narrated as she fought back tears.
Lucy like many other parents begs the Ministry of Health to acknowledge patients like her son and make their treatment easier to bear with in terms of costs and availability of medicines.
“The government has days set out for cancer, diabetes, HIV but who celebrates or remembers Haemophilic patients who also need recognition?”
“Each time I need medicine I have to call the hospital to inquire if they have the medicine, if my son is in too much pain then they have to admit him and put him on paracetamol as we wait for the Haemophilia medicine,” she added.
Like Lucy, Michael Mwangi is father to a patient with a similar ailment. His plight is different saying that unlike Lucy who is equipped with knowledge of the disease, his son lost mobility following an untreated internal bleeding in his knees.
“The government should at least help those like me that cannot afford the medicine or have no knowledge of the disease and raise awareness and make the treatment more available for the cases that are very critical.”
“My son cannot go to school because he can barely walk yet I cannot afford to buy him walking aids, I live in the grassroots and I cannot afford the frequent trips to the hospital, so what do I do?”
Doctor Peter Kibet from Kenyatta National Hospital agrees with Lucy saying that the Factor 8 or 9 medicines that are used to treat Haemophilia patients are not easily available and even when it is the price is too high.
“A single dosage of the factor medicine costs close to Sh100,000 an amount that very few patients can afford; this means that patients have to wait for a donor to send the medicine to Kenya as a grant.”
“Another challenge is that once the medicine gets to the port then it takes time to clear due to the high taxes that are placed. So who will bear these costs? The ministry has to intervene, like what they did with the ARVs make the Haemophilia drugs affordable,” Kibet urged.
He further called on the government to deploy Haemophilia treatment units to the counties saying that most patients have to travel all the way to Kenyatta National Hospital to seek treatment.
“The government needs to open comprehensive care treatment centers at the counties, these facilities will not only treat patients but they will also diagnose patients that are suffering from the disease in good time.”