The story of rizwana
Story of Courage
MANAL ; an inspiration
Hello everyone. Before sharing the happenings of aHUS gale on us, I want to introduce Manal and our family with you. I am Rizwana (mother) and Muzammil is father of Manal, Amal (girls) and Muizz(Boy). Amal is Manal’s twin sister while Muizz is their younger brother. (12y). We are from Pakistan, lives in city Karachi.
I am a microbiologist and working as research lab coordinator in a private University, Karachi, Pakistan from 2008 while my husband Muzammil has done Masters in Physics. He was working in UAE from many years (till 2012 when Manal got sick).
Manal is a wonderful child, she is naughty, intelligent and loving. Her siblings are also of similar capabilities. Teachers are very happy with them because all three are very interactive in classes. Classmates also like them because of their friendly and caring nature. They are witty too and have very good sense of humor.
Amal and Manal are fond of art work; their paintings are often selected for annual exhibition at school. They love baking; most of the weekends are spend on making cakes, and pizzas.
In December 2012, Manal caught flu which turned into severe nausea. Initially she was treated in Aga Khan University Hospital KHI, where she was diagnosed as aHUS then she was referred to Sind Institute of Urology and Transplantation (KHI). There were dozens of blood & plasmaphoresis done till ~3 months. After that her levels of LDH, reticulocyte count drop down and her Hb came to acceptable level her plasmaphoresis was stopped. But urea,creatinine etc were remained unchanged concluding the failure of kidney function. During this time we have started sending samples out of country for gene analysis and antibody titres.
Results from Sick Kids Canada, did not detect any disease related mutation in whole aHUS Panel. We became happy and moved towards transplant plan. Manal’s Aunties started work up for tissue match, HLa typing etc. here I would like to share another pain of me and my husband; our blood group don’t match with hers. The word helplessness was killing us by its complete meanings.
During this process, we requested consultants to guide for any further tests which could be beneficial for Manal before transplant. They suggested anti H factor Ab titre and we send it to IOWA Univ USA.
The results were shocking. The titre was 1:6400. The process of transplant was stopped. Her blood was then sent to IOWA for gene analysis. In which deletion in CHFR 1 and 3 was revealed. At this point, we were perplexed. We had donors but the results were demanding more investigations not only for Manal but also for other members of family, especially donors.
After many discussions with consultants, surgeons, nephrologist, it was concluded that Manal needs Soliris prior to transplant.
We tried to contact Alexion, found no reply. Then Manal’s Consultant Surgeon tried to contact but he also failed to get any response. since then the program of transplant is pending. Now we are searching any hospital/ pharmaceutical company in this world who can help Manal. Moreover, lack of knowledge and expertise about this medicine is another challenge for countries like Pakistan
Apart from money, our families are battling at various borders. Our lives have been changed but we want to turn it back…back to healthy living. We are with you on 29th Feb from this corner of the world. Please add Manal’s voice as well. She is just 13 now, fighting from 2012. It is really very difficult for a child.
It is time for world to realize that treatment is present but out of reach from patients just because of money.
God has given her courage and she is struggling hard, goes to school, keep herself busy in household activities. She is in Grade 8 and is brilliant student. She comes from school directly to dialysis unit. Manal’s father, who was working in UAE had lost his job and now he is with us in Karachi. He looks after Manal while I am on job.
Last but the most important to mention is the love, care and support of relatives, far relatives, friends, friends of friends/ acquaintances’, scool teachers, students, colleagues which gave us strength to bear this unexpected incidence. My heartiest thanks and prayers will remain with them always. May Allah accept our kind deeds and give us success in finding solutions and remedies for such illnesses.