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Voices of Children & Families

 
 
 

Alaina

17 years old
Meningitis
 
Watch Alaina's story here
 
Watch Alaina and CBIPCY Program Coordinator/Clinical Team Leader Joshua Myers
on CTV Morning Live Vancouver  here
 
 

Shelby

16 years old
AVM 
 
Disability can unexpectedly happen to anyone. In 2011 healthy 16 year old Shelby woke up to her alarm clock like any other morning but this particular morning, to an incredible shock, she was unable to move the entire left side of her body. 
An MRI would reveal bleeding in her brain from a cavernous malformation, also known as a cluster of abnormal, dilated vessel in the brain.  
 
Shelby is one of the BC Centre for Ability’s Heroes of Ability for 2014, this award to be celebrated on June 14th at Dining for Dreams has helped Shelby to reflect on her achievements. In the last two years Shelby has journeyed from losing capacity of her left side of the body, losing hope of playing music again and hope of just being a teenager again to making a tremendous recovery.  In two years, Shelby learned to walk independently again, completed high-school, lives in residence at college, volunteering and working part-time. 
 
Josh Myers, Community Brain Injury Coordinator, says that “it’s her spirit, courage and maturity; it has helped her face her injury head on and achieve her goals despite the road bumps.” 
 
“I think everything happens for a reason now but I had so much fear and uncertainty when this all happened,” Shelby says, “it was easy to want to give up in the beginning, I really just woke up one morning and my whole left side was paralyzed.” 
 
Before the injury, Shelby was certain she wanted to pursue a career in music.  She is a seasoned clarinet player and a singer and paralysis of the left side of her body presented great hurdles. 
 
After being medically stabilized at the hospital and a few months of inpatient rehabilitation at Sunny Hill Health Centre, Shelby was discharged home for intensive community rehabilitation with the Community Brain Injury Program at the BC Centre for Ability. 
 
Shelby recalls one pivotal moment when she turned the corner, “I remember thinking what is the point it’s not making a difference even if I do this exercise 20 times.” Despite this, she persevered, “I remember I was sitting with my therapist it was just like the day before doing the exercises but, then I saw it, I saw my fingers curl.”  Shelby and her therapists cried, Shelby called her mom who joined in their happy tears. 
 
Although, it may have seemed like something small at that time to train her body to curl her fingers, the accomplishment of that one small movement generated great momentum for Shelby. Shelby gained incredible inspiration, “every little improvement I started to see I gained more and more momentum and it built my confidence, even knowing that I won’t be 100% better it was still encouraging because it’s a chance of having my life back.”
 
From curling her fingers to moving her hand and arm and then progressing from a wheelchair to a crutch and then unassisted walking, Shelby took charge of her own rehabilitation alongside the Brain Injury Program.
 
The fine finger movements required to play the clarinet are no longer accessible to Shelby, but knowing and playing to her own strengths Shelby started learning to play the piano.  Although the crisis turned Shelby’s life upside down, she didn’t let it defeat her, Shelby says, “It gave me so much faith to believe that everything happens for a reason and taught me to have the courage to accept it and learn from it.” 
 
Last year Shelby finished school with a full course load and was accepted into the music program at Columbia Bible College. Shelby is now pursuing music in school and in the community through a music group that travels the province twice a month. 
When her achievements are celebrated at Dining for Dreams, Shelby who is incredibly humble will go forward with even greater confidence to create the future of her dreams.

Rupert and Skye

9 Years old
Brain Injury in 2011 – Multiple Concussions

 
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My family and I have, and are continuing to experience the most difficult time in our lives.
Fifteen months ago, Rupert, my then seven year old son, suffered a brain injury and physical
trauma as a result of three unexplained falls. At first our team of experts told us he had a
concussion, as time wore on they added second impact syndrome and then he was given the
long term prognosis of post concussive syndrome. The first half of 2012 was a blur of hospital,
doctor, specialist and rehabilitative appointments, often five to seven a week. In between
appointments, Rupert would rest in bed or he would struggle in his Grade Two classroom. Every
day we questioned “Why him?” Every day, through the fear and exhaustion of our heartbreak,
we recommitted to support him in any and every way possible during his time of recovery.
Rupert, always highly motivated and good natured, has worked diligently to achieve modest to
moderate improvement in differing areas. Even though the work is laborious, repetitive,
physically and mentally exhausting he never complains, even when he has every right to.
Rupert knows that he is a different boy now. Just over one year ago he could write, spell, speak
and think clearly, do mathematics, remember things with great ease, and possessed limitless
energy, optimism and confidence. The reality of this change has taken a great psychological and
emotional toll on the whole family. (Parenting a young child who is experiencing an existential
crisis, not to mention a brain injury, was not in any of the parenting handbooks I read!) The past
months have taught us that we can not fix him or go back. After a lot of work, we have let go of
all expectations that Rupert will wake up and be who he once was. After much grieving, we can
now wholeheartedly accept and lovingly embrace the new Rupert. He is still having a hard time
accepting this but we have faith he will...someday.
As one knows when one is faced with extraordinary challenge, extraordinary things result. We
are actively trying to find clarity and perspective so that we might see the gifts that we were
given in exchange for the hardship endured. With some reflection, we have concluded that we,
collectively and independently have grown a tremendous amount with regards to strength,
focus, skills, and wisdom. Our priorities are alined with our values and, although we are frayed
around the edges, the fabric of our family is a tighter knit than it was before. As we navigate the
next couple of years of his recovery, our approach will be holistic and our focus healing. Our
new goals are to give Rupert the tools and opportunities to find happiness, success and health
on his new trajectory.
For months and months, my family put our shared life on hold - not so patiently waiting for
things to get back to normal. We now know that we are not on a detour slowly weaving our way
back, but on a new road. As we say good bye to what once was and what will never be, we are
heartened by thoughts of what is and what shall be. No, we can’t yet see the light at the end of
the tunnel, but knowing that it is ahead, our path is brightened.
My family and I have, and are continuing to, experience the most difficult time in our lives - full
stop. It is also necessary to add, that my family and I day to day, moment to moment are
choosing to learn, to grow, and to see the good and the beautiful that dwells within us and that
surrounds us. A brain injury is a tragedy, but for us it is also an invitation to live a life of greater
depth and breadth. For that we give thanks.
 
 

 

 
 
Mursal Sakhi
 

Mursal

18 Years old
Brain Injury in 2009 – Neurocysticercosis & CNS Tuberculoma

At 15 Mursal suffered a severe seizure and was found to have a large mass in her brain. When she came out of her coma she discovered the loss of specific functions like balance and coordination, memory, concentration and attention had to be relearned. With maturity well beyond her years, she identified her desired personal outcomes of therapy, designed her own treatment plan and motivated herself to accomplish the goals she set out to achieve. Despite feeling the emotional and psychological stress of memory loss affecting her sense of identity, Mursal's positive spirit and attitude carried her forward.
 

What are some things that you’ve learned over the years that you would want to share with someone who is newly injured?

“Never give up! Always believe that you will reach your potentials. Try to build a strong character within yourself.”


How has your transition been into young adulthood?

“Wow, interesting one! I would say that 'more responsibility comes along. The best way to approach obstacles that comes along your way is to make your weakness, your strength. “


What are your educational/career goals?

“My education and career goals have been health related ever since my injury. I am currently enrolled into Foundations of Nursing prior to entering full time BScN. Eventually I would like to work in the O.R as an Anesthesia Assistant.”


What does life look like now for you?

“Life is very stable and structured. I have realized what steps I need to take in order to achieve my goal and I’m taking small steps towards achieving them. Nevertheless, there are obstacles to deal with in between but what's life without jumping a few hurdles? ;)”


What’s your favorite pastime?

“My favorite pastime would be socializing and debating.”
 

 

Dane Issigonis

 

Dane

13 years old
Brain Injury in 2010 – AVM Bleed

On December 26th, 2010 Dane was rushed to a local hospital with flu like symptoms. On the way to the hospital he began to lose consciousness and it was determined that he had suffered a potentially fatal bleed in his brain. Dane had to re-learn all of his basic skills such as walking and talking. After months of rehab in hospital, and in the community with the CBIPCY he has made tremendous progress and was awarded the BC Centre of Ability’s 2012 Hero of Ability award.

 

What was the best part about coming home from the hospital?

Being able to be at home to relax and not have to go to therapy all day.


What did you learn about yourself during your recovery process?

I learned that everyone is unique or special in their own way. I used to think I was the same as everyone else, but I'm not I'm different. I'm stronger between the ears than I though I was.


How was it going back to school after the injury?

Its tough because I get tired, but it's nice to be back with my friends.


What did it feel like to get back on your skates for the first time after your brain injury?

Awesome... it felt great! I skated better than I thought I would. It's harder than it used to be, but it's fun.


What is your favorite thing to do?

Be with my friends and family


List one cool thing about you that not many people know.

I like drawing and painting.


What do you want to be when you grow up?

I would like to be an actor in comedy movies.


To learn more about Dane’s story follow the link below: