Striving for Fanconi Anemia Treatment in Kenya

In 2008, I lost a niece by the name Lillian. She was just 12-years-old and a victim of complications from a disease called Fanconi Anemia (FA.) Because of the toll the disease took on her body, she later developed leukemia.

Fanconi’s anemia is a disease passed down through families (inherited) that mainly affects the bone marrow. It results in decreased production of all types of blood cells.

–NIH

Before she was diagnosed with FA she had been affected by frequent pneumonia, malaria and typhoid attacks. She was the daughter of my younger brother, Peter, and his wife, Regina. I was disturbed by her condition, how quickly it ravaged her and I wondered why such a little girl should lose her life to a disease so simply treated.

Many disturbing questions came to mind about the connections between FA and leukemia. In 2011, Lillian’s younger brother (and my nephew) Hillary, was also diagnosed with FA.

I immediately started researching the disease online. It was from that research, that I was able to see the link between the earlier symptoms that Hillary had at birth and his FA diagnosis. I learned that his being born without thumbs on both of his hands was actually a symptom of the disease. (An American surgeon assisted in the reconstruction of the thumbs from the pointing fingers.)

As I was absorbing all this, the last born son, Evan, in Peter’s family began to express FA symptoms and unfortunately he succumbed to the condition, and we lost him in April of last year. I was frequently visiting these children at the hospital and that’s how I came to know that there were other kids in the hospital that had similar problems.

I wanted to do something to alleviate the problems faced by FA patients and their families. In particular, I came to know of a boy by the name of Brian whose mother could not afford the medicine and opted to have frequent blood transfusions done on her son. This went on until the boy could not undergo more transfusions in the normal way since it became difficult for medical professionals to trace the veins and thus the transfusions required a surgical procedure.

I had organized my brothers and sisters, and we had raised some cash to cater for Hillary’s medicine for a couple of months. However, I realized that plan was not a sustainable one.

I appealed to many individuals and organizations in Kenya, the United States, the UK, Italy, Israel, Germany, Australia and a few other countries. An organization in the US provided me with contacts for Dr. Grace Kitonyi, whom I came to learn later was the same caregiver to Lillian, Hilary, Evans and Brian.

I reached out to Dr. Grace Kitonyi who lectures at the Medical School of the University of Nairobi and is also a caregiver for FA children at Kenyatta National Hospital (KNH), which is the lead referral hospital in Kenya.

We had frequent discussions through email and over the phone, and I volunteered to create some awareness through her support. So we started putting together a few ideas and sharing with organizations and individuals that I had identified through the internet.

I wrote to a US based organization, known as Fanconi Anemia Research Fund where the Director of Family Support Services, Teresa Kennedy, provided me with literature materials that I shared with the University of Nairobi and Peter’s family. A German couple (Ralf and Cornelia) who had lost two of their daughters to this condition were really touched by the email communication that I’d had with them. They copied the communication to several of the FA families and medical professionals in Germany and, along with others, they decided to support Hilary and two other FA children in Kenya with funds to purchase medication.

They have done that for the last year.

Our goal is to supply at least 10 pediatric patients with the commonly used medicine for FA, called Oxymetholene. It is expensive for an average Kenyan family, where the medical care is mainly the responsibility of the families, as insurance is unaffordable to all but the wealthy.

In the absence of Oxymetholene, patients have been undergoing blood transfusions to help in replenishing blood cells and platelets. In extreme cases, they might also undergo bone marrow transplants to help manufacture the blood cells and platelets in the body.

FA is a complex condition that depresses the body’s immune system and thus make the patient susceptible to opportunistic diseases such as pneumonia, malaria and typhoid.

The local community has appreciated our efforts in obtaining the medicine, preventing the children from having to undergo frequent blood transfusions.

In the future, we would like to assist in equipping Kenyatta National Hospital (KNH) with medical facilities and expertise to conduct bone marrow transplants, while also directly providing medicine to assist the FA children and families.

Submitted by Charles Wambugu from Kenya.