CF heroes Worldwide
This blog is made to let you hear stories from around the world about CFers and Cf parents just like you. Unlike you though, they weren’t blessed to be born into a country with a medical system capable of handling CF. Our goal is not to make you feel guilty or to make you cry but to make you aware. For so many of us it is hard to imagine a medical system much different from what we have in the US, Canada or whatever country we have. So, we want to highlight some parents and CFers who have gone above and beyond to stay alive or keep their kids alive. We start in Libya!
I would like you to meet Abdulrazak Elhafian and Juma Elhafian, they are from Tripoli, Libya and they are the parents of four children:
Nour, girl, 6 yrs old, who has Cystic Fibrosis
Qamar, a girl, 4 yrs old, was born with DDH(developmental dysplasia of the hip) or hip dysplasia that was undiagnosed until he started to walk.
Laith, a boy, 2 yrs old
Lynn, a girl, 2 yrs old, was born with a heart defect that has left her with one ventricle and now has atrophy in the pulmonary artery after the first surgery.
I didn't think that I knew anything about Libya but I was very surprised that I knew quite a lot. Libya is mentioned quite a bit in the Bible, the cities of Tyre, Sidon, Cyrene, and Tripoli are all mentioned and a Cyrenian named Simon carried the cross of Jesus at His crucifixion. Cyrenians were present at the day of Pentecost as well. Libya was an important part of the Greek empire and was subsequently part of the Roman empire as well. It was a very beautiful and wealthy country for a large part of history. Muammar Gaddafi was also the leader of Libya from 1969-2011 when he was killed. I have heard the name so many times but had no idea he was in Libya. Libya has a rich history that has been filled with wealth and beauty until fairly recently.
Now that we have had a short history lesson on Libya, I think it's time we talk about the struggles that the Elfafain family have faced. I am sure that a lot of these struggles are not unique to the Elfafain family but unique to all the CF and rare disease families in Libya.
Nour was 3 yrs old before everything started to go from bad to worse. Nour’s baseline was an intermittent cough along with bowel movements 3-4 times a day. Every doctor that they had seen had said that it was normal and is okay as long as she is maintaining her weight, even though she wasn’t. At this time there weren’t any problems with Qamar as far as they could tell.
August 2020 things turned for the worse. Nour developed a cough that wouldn’t go away. Morning and night, awake or sleeping, playing or resting she was plagued with a horrible cough. The doctors started to recognize that something was wrong but couldn’t pinpoint what it was. So, they put her on oxygen and prescribed nebulizer treatments to try and break up the mucus.
To make things even worse Abdourazak’s wife, Juma, gave birth to twins that same week. It was a boy and a girl, Laith and Lynn. Laith was born with no problems but Lynn was born with heart deformities and she was losing consciousness. It became very apparent she wasn’t getting enough oxygen because her fingertips were turning blue!
Two days after the birth of the twins Qamar was diagnosed with DDH or hip dysplasia, as it is commonly known. Qamar was learning to walk and was having many problems which led them to take her to the doctor where she was diagnosed. Thankfully, she is walking fine today with no problems, but at the time it was a devastating blow, after several devastating blows already that same we
I think I need to remind everyone, or better yet, inform everyone that there was a civil war going on in Libya and they are currently in a crisis. Many battles have been, and are currently happening in Tripoli. While all of these maladies are attacking their family, forces inside their country are attacking their fellow countrymen.
I just want to stop and ask you to think about how you would respond to such a crazy moment in time. Not only is your beloved country being torn apart but your family is growing and almost every time it grows it is hit by another problem! I don’t know about you but that would drive me insane! I have no Idea where I would draw the courage to keep fighting to preserve my own life, let alone my family's life!
Abdulrazak said that he turned to God! He asked, prayed and begged God for the courage and strength to keep fighting, pushing and pursuing to be able to find answers for his 3 daughters! God answered his prayers and enabled him to keep going!
They took Nour to Tripoli Medical Hospital where she was admitted into the ICU. The doctors knew her condition was very serious, but had no idea what the root of her problem was. She still had not been diagnosed with anything. Because of the quick thinking by
, they were able to take devices from all different departments and give them to Nour to keep her alive. There was a shortage of nurses in the hospital so Abdurazak himself helped with everything, becoming a nurse for the night. Even with Abdurazak’s help her condition continued its steady decline. She was on IV antibiotics and a cocktail of many other meds but nothing helped, she lost consciousness and just kept getting worse second by second and minute by minute.
After 2 days in coma she regained consciousness. She started getting better little by little but was still on a lot of oxygen and antibiotics. They moved her to the pediatric unit. That didn’t last long after only a couple of hours she took a nosedive and was returned to ICU where she stayed for 2 weeks. With COVID restrictions in place no one was able to see her in the ICU. Abdurzak sat outside the ICU for 2 weeks, day and night, checking on his daughter. She was the only conscious one in the whole ward and was very scared. She screamed day and night, not understanding what was going on, screaming for mom and dad. Abdurazak suffered as much as Nour, listening to her screams and every time they stopped he worried that the worst had just happened. Being so close, yet so far away takes a toll on any father, but knowing the situation is a hell that I wouldn’t wish on my worst enemy. The doctors said that every minute she was awake she kept repeating “I want mama, I want papa” from when she woke up until she fell asleep.
The doctors were afraid that the damage of being separated from her family would be greater than the damage of whatever was wrong with her and returned her to the pediatric department. She was so constipated and backed up that she couldn’t eat. The GI doctor wanted to operate, but the pulmonologists said that her lungs were so poor that if she was operated on, she would die. The GI doctor tried to pressure Abdulrazak into signing the surgery waiver but he would not sign it. A week later her intestines healed on their own, without surgery. She stayed for 40 days and nights in the hospital before she was able to be discharged. Before she was discharged they sent a stool sample to France and a blood sample for genetic testing to Germany, which was how she was diagnosed with CF.
There are only 2 doctors in Libya that have experience with CF, one will not treat patients because there is not support or knowledge of CF from the government.
