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FARAFARA Cure FA

Yasin Rehmanji

Yasin smilingName: Yasin Rehmanji

Age: Turning 15 soon

Where do you call home? Ontario, Canada

Education: almost finished Grade 9

Who do you live with? I live with my mom, dad and older brother (who is more of a bother). It is just the four of us in my house, but I have my grandparents, uncles, aunts, and cousins around too.

What's a typical day for you? On weekdays, I go to school, come home and do homework. On weekends, I do various activities depending on the time of the year; I go horseback riding in the fall and spring, swimming in the summer and do sit skiing in the winter.

How long have you known you are living with FA? I was diagnosed on November 30, 2009 - I was only 6 years old, but I knew there was something wrong and happy when my parents actually had answers for me.

Are there any others with FA in your family? I am one of a kind! Never heard of FA before I got diagnosed and my parents even tried to find other distant family members but no success.

What do you like to do to stay active and what type of exercises work for you to stay strong? I use my walker and do a range of motion exercises daily to help me, as I am usually in my wheelchair otherwise. I even use a stander to have my meals so that I can weight-bear. I don't really like exercising as it makes
me too tired.

Yasin Collage 2Do you have any hobbies or special interests? I like to play video games and watch YouTube videos. I like crafts and making things.

When FA gets you down, what do you think/do to feel better? I start to be goofy and annoy others, so I don't feel alone. I usually do things to distract myself and forget about whatever was bother me. Sometimes I talk to my mom about things too.

Tell us a little more about you... I really want to be a firefighter and help people. I also enjoy cooking and would like to be able to make food all by myself. I especially like to bake sweets like cookies and cupcakes.

Interview with Yasin's Family

Your Names: Sakina Rehmanji (mom), Juzer Rehmanji (dad) and Aliasger - known as Ali Rehmanji (brother)

Relation to FA patient (Yasin): Son and brother

What quality or trait has been brought out the most in you all despite living with FA? Learning to reach out to new people all the time and build a better network of people. Being able to problem solve and get creative all the time. Always finding solutions to make things better. Learning to go with the flow, knowing nothing is impossible, it just might take some extra energy.

Yasin Collage 3What did you find was the best way to discuss the diagnosis with Yasin? It took almost a year after diagnoses before explaining and telling Yasin about his condition. Due to his young age at the time, it had to be simplified to the maximum. Yasin seems to be more relieved than upset when we told him. Over the years, he asks questions and we answer to the best of our ability.

What advice would you give to other families who are newly diagnosed? Don't let the disease control your life and family, take one day at a time. Do all the things you enjoy as a family, while you can for as long as you can. Never give up hope! Be honest, have open communication and discuss everything openly.

How has he inspired your life? Yasin is always happy and smiling. He has inspired us by his carefree attitude. Despite everything he is dealing with, he still is goofy, playful and loving. He has shown us that if he can do it then so can we and we should not take things for granted.

How have you been encouraged for his future living life with FA? Yasin has done many different programs where he has gone rock climbing, done ropes courses 30 feet off the ground, played various games and activities like wheelchair basketball, learned archery, sledge hockey, and cooking. He has proven repeatedly that he can do anything that he puts his mind to. Yasin likes to try new things, despite being scared. He can fit into any environment and succeed when motivated.

What is one way FA has POSITIVELY affected your lives? We don't take things for granted. We appreciate time with family and friends. We enjoy meeting new people and learning from everyone's experiences.

FARA Ambassador Brittany Sommerfield


About the Author

FARA Ambassador Program