Help Zahra Fight AT/RT
Organized by: Yeliz Ali
Hello everyone, I would like you to meet 5 year old Zahra, her parents (Nosheen and Wael), and her younger sister Leia.
I would like to take a moment to thank you for visiting this page and for any support you have extended to anyone in the past. You take time and/or money out of your day and gift it to someone else with the intention that your efforts will make their journey a little easier or simply to let them know that they are a part of a larger community and they are not in this alone!
May each of you be blessed for the work that you do (whether it's a prayer, visit, donation, or anything else). You are an inspiration.
Zahra is an incredibly intelligent and unbelievably witty 5-year-old girl. In July she was diagnosed with a rare and very aggressive brain tumor called AT/RT (Atypical Teratoid/Rhabdoid Tumor). For the couple months prior to her diagnosis, Zahra was vomiting in the mornings and would complain of headaches. She ended up missing a month and a half of school because her symptoms gradually got worse. During this time, she was seen by at least 10 different doctors – who insisted it was the flu, a GI specialist who suggested a stomach ulcer. It wasn’t until a family friend (who is also a Pediatrician) received Zahra’s files and listening to Nosheen realized that an MRI was necessary.
Within a day the results came back. It was the worse day in her life; confirming that her suspicions were correct brought Nosheen to her knees. She then discovered that Zahra was only about 1-3 cases/year.
AT/RT is a very aggressive brain tumor, accounting for 1 to 2% of pediatric brain tumors. In the United States, 3 children per 1 million get diagnosed each year (~30 kids/year in all of America) and in Canada, it is approximately 3 kids/year. Due to the rarity of this tumor and the lack of randomized controlled trials it has been challenging to define optimal therapy and advance treatment. Additionally, due to the poor prognosis and limited research for this type of tumor her mother is doing everything possible. She is looking into further treatment internationally that is unfortunately not currently available in Canada.
Since her diagnosis Zahra has undergone 4 surgeries:
• Resection (brain surgery to remove the tumor)
• A shunt was permanently placed to help with flow from her brain
• Stem Cell Rescue (which will be reintroduced back into her system after the next cycle of high dose chemotherapy)
• G tube in her tummy to feed her
As a result she has been under general anesthesia every Thursday since her diagnosis.
Throughout this journey I have seen Zahra endure some remarkable events. She is constantly being poked, assessed, reassessed, has learned her medications and what each one does (ex. when her pain gets too high she asks for "another dose of hydromorphone"). She calls the tubes and ports sticking out and into her, her "plugs"! My first visit she greeted me with "did you see my plugs? They are colour coded"!
It is absolutely gut wrenching to see her go through so much pain and to see her be consistently alert as to what they are going to do next. Her mother (Nosheen) is with her 24/7 and her father being the only source of income is juggling between going to work and then back to the hospital. They also have a 3-year-old daughter, whom also needs to be cared for. Leia (Zahra's sister and best friend) is only 3 and due to the limited resources it is becoming increasingly difficult to take care of both kids.
During this difficult time, we ask that you donate any amount you can, every dollar helps and is beyond appreciated. By donating you will help lift the weight off this families shoulder. They will use this money for over the counter and take home medications, medical expenses, bag for the G tube, formula ($60/day = $7,200 for 4 months), child care, travel expenses, and items that Zahra may need throughout this process.
I plead with each of you to please help me help this little girl and her family. What she goes through each day, no child should have to face. If you were to only spend a minute with Zahra, I have no doubt that you too would do everything in your power to give this little girl a future that she will undoubtedly do spectacular things with. Thank you.