World Hemophilia Day was celebrated last week around the world. While everyone was wearing red, to symbolize the blood and treatment we have in common, I wore white, to symbolize those without treatment. After all, the logo of the World Federation of Hemophilia is a red figure with their arms around a white figure. The haves and the have-nots.
We ship donated factor to the tune of over $7 million per year to developing countries. Once in a while we get an unusual request, such as this one, from a refugee.
“I am a Syrian refugee whose son is in dire need of a particular medicine which is not consistently available here in Jordan and is extremely expensive. I am a Syrian national, born in 1974, married with four children. I was forced to leave my country after the war broke out in my hometown Darayya in Western Gouta of Damascus, when the regime forces broke into the town. Then, the local people were forced to leave due to the bad shelling by the regime.
“My house was damaged after being hit by many shells and was not able to live elsewhere for a long time because I was subject to detention by the regime’s checkpoints. Therefore, I was forced to leave my job as a teacher and became jobless. Then, I had no other choice but move to Jordan.
“The problem is that I have a 13-year-old son who suffers from hemophilia B, which is a blood clotting disorder, so that when my son gets injured or hit, he bleeds to death unless he is given factor IX medicine. The bleeding specific to his condition is generally internal, inside the joints. For this reason, I was forced to leave Syria because the internal bleeding could likely be fatal, especially due to the difficulty in reaching hospitals in Syrian wartime conditions.
“I have been a refugee in Jordan since March 31, 2013. Although therapy expenses are incurred by the UNHCR, the medicine sometimes is missing all over Jordan and not sold in pharmacies there. This medicine is very expensive so that individuals cannot afford it. The alternative medicine is plasma. Yet, it is very dangerous if patients take large doses of it.
“When my son gets sick, he must go to the children’s ward because it is not possible for Syrians to be treated in the hemophilia B ward in the Jordanian hospitals. This means that my son must stay with his mother in hospital for one day at least each time he is sick.
“The only hospital that has the medicine is way far from our residence, which disunites my family. I do not know where to leave my other kids when their mother is absent; the youngest kid is only 3 years old. This prevents me sometimes from taking my son to hospital when his bleeding is not heavy. This leads to harming his joints when bleeding continues and makes them stiffen and therefore, he will lose his ability to move especially that his left knee’s joint is greatly damaged due to continuous bleeding. It is known that it is unnecessary for the patients who suffer from hemophilia B to stay in hospital because they only take the medicine and return back home.
“Sometimes my son might bleed outside regular operating hours. This means that we might not get the medicine on time. This causes a handicap to my son’s joints and paralyzes his movement as doctors has warned from such results many times.
“I extend my sincere thanks to you for your selfless humanitarian effort to help the refugees of our country. I would like to thank all those, governments, individuals and non-governmental organizations, cooperating to support the vulnerable Syrian people.”
This is a gripping account of pain, love and survival. Fortunately, we were able to send a donation of factor, and will continue to help this family, and hundreds more, through Project SHARE. We are grateful to our supporters, and to those who donate factor to us each day.
Learn about Project SHARE here. Call us at 978-821-6197 or email us at firstname.lastname@example.org if you have factor to donate. Thank you for caring and sharing!