Meet Mustafa

1). Tell us a little about yourself

I was born in Manchester, England and came to the U.S. to New York in the year 2000. I moved to Texas in 2003 and have been here ever since. I live in Grapevine with my parents and grandparents. I serve on the SBANT Adult Advisory Committee and the Spina Bifida Family Advisory Committee

2). What are your favorite hobbies?

I enjoy doing art, specifically Arabic calligraphy, travelling, and writing. I found interest in Arabic calligraphy by watching friends doing it and videos online. One of my favorite trips was travelling solo around Europe. I am working on writing a memoir about disability and mental health.

3). What are you currently doing or working towards?  What are some of your current goals? (Current job, dream job, education, etc.) 

I am currently working towards completing my undergraduate degree at UT Arlington in the mental health field hoping to work with children in the future. I have also recently started working as a Youth Support Specialist.

4).  What are some of your earliest Spina Bifida related memories? (SBANT events, conferences, camp, doctors, meeting other kids with SB, etc).

Some of my earliest Spina Bifida memories are from when I was attending Camp TLC from 2005 when I was 9 years old and making friends. Another memory I have is attending the SBA Conference in Minneapolis, MN. I also remember when I was admitted to Children’s Medical Center in Dallas many times, I would go down to see the trains display in the hospital lobby. That was a highlight of my hospital stays there. One year, I celebrated my birthday while staying in the hospital after surgery with family and friends.

5). What have been some of your greatest challenges in life?
Some of my greatest challenges have been dealing with my mental health and figuring out who I am and want to be. I have experienced difficulties in school, bullying because of my learning disability, medical challenges,

and anxiety. It all has affected my mental health and self-confidence and identity in a big way. I am slowly overcoming those past experiences and taking what I learned and continue to learn to better my life now.

6). What are some of your greatest strengths? How do you think your challenges have shaped your strengths?
One of my greatest strengths is having empathy for other people. I know what it’s like to struggle and overcome challenges, specifically those related to Spina Bifida, and I can understand and be there to help others

experiencing similar situations. Another strength I have is being adaptable. I have had many changes happen in my life, whether they’re Spina Bifida related or not, like getting a urostomy or moving states. Learning to adapt to them was difficult, but as time passed and I learned a thing or two, it became easier to adapt to different situations.

7). Who was your favorite doctor or nurse that has had a lasting impact on you?
I didn’t really have a favorite doctor or nurse, but I have been blessed with being cared for by some amazing doctors and nurses that have made a difference in my life –
-Dr. Adams and nurse Sue Leibold, both at the Spina Bifida clinic at Scottish Rite.
-Dr. Snodgrass, who I had as my urologist for many years.

8). Do you have any funny stories from doctor appointments or hospital stays?
I remember when I came out of surgery and was in the recovery room still feeling groggy from the anesthesia, the nurse had asked me the current U.S. President’s name to check my awareness and how alert I am, and I said

“George Washington.” Thankfully, I remembered the correct name once I was fully awake! I did think I was right because the room I was in recovery was all black and white – just like the 1700’s!

9). What have you found in common with others with Spina Bifida?
Besides the countless surgeries I and others with Spina Bifida have had over our lifetime (and will possibly have more in the future), I have found that we are creative wonders, both artistically and in how we live our life.
There are many instances where we must adapt and come up with a creative solution to a problem. Whether it’s related to mobility, managing our medical/health needs, or accomplishing our life goals, we find a way to make

it happen.

10). As an adult with Spina Bifida, what would be your best piece of advice for someone young?
Only you know yourself best. And if not, learn as much as you can over time about yourself. Know your strengths and weaknesses. It will help you adapt to overcome challenges easier and be the best version of

yourself, despite having Spina Bifida.

11). If there was one thing you could tell the world, what would it be?
Don’t determine the value of a person by what they look like, but by what they can do. Just because we may
have Spina Bifida or look like we aren’t capable, it doesn’t limit our ability to do anything. We’ll find anotherway to do it. Just give those like us a chance.