YOUR story : JoAnna
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 Thursday, 8.1.13
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in the best of ways.
there are times where i feel like i can't get out the stories fast enough!!!
then i am humbly reminded that everything in life happens at 'perfect' timing... as it will be when each story is shared.
so instead i just take a deep breath & rest assured that the simple acting of just sharing creates a ripple effect that is
LEAPS & bounds further then never having shared at all.
from the depths of my heart, thank you again to all of you who have shared your stories to date.
...and today i have the great honor of sharing another inspiring story...
please meet JoAnna.
this is her story.
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I think lots of people think their lives will have an impact on the world,
that what they do, who they influence,
will somehow make a difference to others.
I am one of those people.
I just didnʼt know how,
but in my head, I was going to make a mark.
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loving aunt to 4 nephews and 3 nieces.
(I do LOVE them all more than theyʼll ever realize.)
I had just left a corporate job to try to find my “true” calling (never really liked the 9 - 5 corporate gig)
and was just starting to “test the water” with a few career opportunities when the unimaginable happened.
In 2003, my brothers beautiful 5 yr. old daughter, Alana, died from the flu in about 18 hours.
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and the next, limp and lifeless.
The ironic thing is she looked perfect, like a doll, with no sign of disease.
But the sneaky little virus attacked her brain and rendered her brain dead in no time.
NO WAY TO COMPREHEND THAT....IT WAS THE FLU!
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a respiratory one and a very dangerous virus at that.
The fact is, there are MANY people today that still donʼt know
and donʼt take flu seriously.
Alana is proof that flu can and does kill,
even previously healthy children and adults.
The magnitude of the loss was unbearable and almost suffocating.
Anger,
sadness,
devastating heartbreak,
disbelief,
a million things crowd your head.
Life would NEVER be the same again as grief and reminders of the fragility of life were now center stage.
Her death affected an entire family, school, and church community.
The collateral damage was far and wide.
Alana was such a beautiful, fearless, determined spirit.
I was so looking forward to being her “special person” in her kindergarten class that early February 2003.
Instead, I was going to her funeral.
The special valentine I bought was put next to her in her casket.
I was buying flower arrangements as beautiful as she was that sheʼd never see.
Nothing made sense.
Fog sets in and you have no idea how youʼll make it through the next day,
let alone the rest of your life.
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and my dad was diagnosed six months after that. Disease and devastation were everywhere.
My brothers family was struggling with the weight of the immense loss and was slowly falling apart.
His surviving children, an 18 month old and seven year old boys,
were doing their best to move forward in the “new normal”,
with the 7 year old actually asking for professional help to cope.
I could not begin to know the devastation and living hell my brother and his wife were going through everyday.
My “job” became the family care taker (with constant oncology appointments for almost 3 years).
It was a lot to juggle, but survival mode kicks in and you go on auto pilot.
Five years and two additional deaths later (my dad and my youngest brother did in the interim),
the cloud of grief was still very present.
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and the Center for Disease Control started tracking the number of pediatric deaths.
A few families across the country that had experienced the same devastating loss, formed Families Fighting Flu,
of which my brother and I were founding members.
Through the power and testimony of our collective stories, the recommendations slowly changed,
broadening out the age range until the universal recommendation of today (all people age 6 months and older).
At the same time, between 2004-2007,
my family informally partnered locally with The Visiting Nurse Association to administer flu shots at
various church and school locations reaching over 400 people.
In 2009, my brother was finally somewhat clear enough to constructively
direct the immense sadness into a formal non-profit founded in Alanaʼs name.
It was a way to remember her and maybe help others so they may never have to feel the pain
of losing anyone to a vaccine preventable disease.
I think that was the hardest part, living with the unknown that maybe if Alana had been vaccinated
(she was not, as the Center for Disease Control guidelines at the time were 6 months - 59 months),
there was the possibility she may not have died.
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the focus of Alanaʼs Foundation was influenza education,
awareness and providing convenient and affordable vaccination options (through community clinics at schools, churches, etc.).
And it was well received vaccinating 100ʼs of people.
Based on our immediate families collective grieving experience,
the mission was expanded in 2011 to also be a resource for families that have lost a child
(short term financial assistance, grief support referrals or financial assistance, etc.).
Since our inception, we have been able to provide over $43,000 in
vaccinations and family support reaching many in underserved populations.
*Just a side note:
I was recently asked why a family that has lost a child is more “worthy” or “needy” than
any other family going through a hardship.
The answer is simple, they are not more worthy or needy, it is a different need.
A need that NO ONE can possibly relate to unless
they have experienced this type of loss.
It is something you would not wish on your worst enemy.
I do not believe that Alana died for a reason because there simply isnʼt one good enough.
Not here, not now, not today, not ever, not with what we live with everyday.
I do believe her death can be an example to others to take precautionary action against a potentially
deadly disease that IS vaccine preventable (there is too much science to prove otherwise).
If one person, one family, is spared the pain and grief we have gone through,
it makes our efforts worthwhile.
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each and every time I hear my brother tell “his” story,
I cry.
It takes me back to the hospital - the feeling of helplessness and holding
my perfect angel with no life at all.
The mission of Alanaʼs Foundation drives me to educate about flu and make people aware of our organization
so we may help as many as needed who find themselves in this situation.
We exist to help people, but can only do so if people know we exist.
My nieces and nephews continue to be my passion.
Every hockey game, basketball game, recital, school program, etc. is more meaningful than the next.
I make it a point to be there in support and witness to their extraordinary ability to overcome adversity.
And our beautiful Alana watches over us in every rainbow that appears
(sometimes seemingly out of nowhere) and butterfly that finds us in the most unlikely places.
Our love for her endures, our faith is not lost,
and we KNOW we will see her again.
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(And, as a natural introvert, someone who is energized by being alone
and whose energy is drained by being around other people - movers and shakers of the world
are often considered to be outgoing and social. So, to take such a public stand on
something very personal is very out of the box for me.)
Whatʼs important is that it I believe in the message and
I have confidence in knowing we are making ourselves available to help those in need.
We are making great strides on the flu education, awareness and immunization part of our mission.
We really need to let more people know we are also a resource for families that have lost a child.
It is my hope that by sharing our story, we do just that -
increase awareness for who we are and what we do for
the opportunity to help even more.
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Approach each day, person or challenge with
COMPASSION,
HUMILITY, and
INTEGRITY
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I love being an aunt showing care and concern,
and offering love and support in their lives.
Hopefully I am a positive influence.
Although not always easy,
I am as open and honest as I can be about my past so maybe they can learn from my experiences
good, bad and in between.
(I also have to say I LOVE my dog, Mischka.
Although he and I are a therapy dog team at Karmanos,
he is MY therapy everyday
having helped me through my most dark days the last 9 years.)
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what is your most favorite quote?!
"Live simply,
love generously,
care deeply,
speak kindly,
leave the rest to God."
- Ronald Regan
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thank you, JoAnna, for sharing YOUR story.
you are truly inspiring.
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Thursday, August 15th!
to purchase your ticket & get more information :
CLICK HERE!
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check out the website ---> HERE!
& to purchase your tickets ---> CLICK HERE!
with love & admiration,
ksen
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