Dedicated to John
My brother
His brand new SE Harley Davidson
My 12 year old neice
An inagural ride
On a beautiful day
A dear jumps out
Hits him or he hits it
It doesn't matter
She's ok
He's not
Surgery
Broken bones, a punctured lung
Brain injury
Even with a helmet
He's alive
The bike is dead
It doesn't matter
An airlift to Vancouver
In and out of ICU
Where am I?
Vancouver
Why does my stomach hurt?
You had your spleen removed
What's a spleen?
He asks every ten minutes
It doesn't matter
One day we're nine at the farm
One day he's now
Next day we're twelve
Then he is back
Each day is better
But slowly
Forward and back
It doesn't matter
My brother
We were Friends
Growing up together
Life took hold
His Life, my life
not always in sync
But he was there
Always there
And he's still there
And that is all that matters
Susan ©2011
Thursday, June 23, 2011
Thursday, June 2, 2011
June 3-5 Batten Disease Awareness Weekend
Press Release: June 1, 2011 (Reynoldsburg, OH) – Batten Disease Support and Research Association (BDSRA) is holding its 3rd annual Batten Disease Awareness Weekend, June 3-5, 2011 to bring recognition to a rare but devastating disease. Batten disease is a genetic neurological disease that brings an early death to each child it affects. The disease may not be well known, but its effects on a family can be seen in numerous cities and towns around the country.
“Approximately 30 children will be diagnosed with Batten disease this year, and about the same number will also pass away before the end of 2011”, said Adina Ryan, development director for the BDSRA. “That is simply too many children and families who will not get to celebrate their 3rd birthday, play little league, or simply fulfill all the plans and dreams that every mom and dad wished for.” she continued. "Our only hope is that scientists and researchers will find a cure that will save future generations of our children," she added.
While there is hope in research for a treatment or cure, the funds are hard to come by. Families around the world will be doing their part this weekend to raise both awareness and funds for children suffering with this fatal disease. You can help spread awareness about the cruelty of this disease. On June 3-5, 2011, please take a moment to tell someone about Batten disease and how it can steal a precious child’s hopes and dreams. You can also donate to the Batten Disease Support and Research Association by visiting our website at www.bdsra.org. Every story and every dollar makes a difference. The cure depends on us...we depend on you.
A Deadly Disease with No Cure
Batten disease is a genetic neurological disorder that affects children and adolescents. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. Presently, there is no effective treatment for the disease and the disease is always fatal.
About the Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. "Over 50% of our annual budget goes toward research, and more than 96% of our funding is provided through families of children with Batten disease and private contributions," said Lance W. Johnston, Executive Director. "In order to find, and fund the cure, we simply have to broaden our horizons and get more interest in helping these children, said Adina Ryan, Director of Development.
Brenna Colleen Greig
"You will miss her." It was said with brisk but genuine sympathy...."Like a fibre gone from my heart."
“Approximately 30 children will be diagnosed with Batten disease this year, and about the same number will also pass away before the end of 2011”, said Adina Ryan, development director for the BDSRA. “That is simply too many children and families who will not get to celebrate their 3rd birthday, play little league, or simply fulfill all the plans and dreams that every mom and dad wished for.” she continued. "Our only hope is that scientists and researchers will find a cure that will save future generations of our children," she added.
While there is hope in research for a treatment or cure, the funds are hard to come by. Families around the world will be doing their part this weekend to raise both awareness and funds for children suffering with this fatal disease. You can help spread awareness about the cruelty of this disease. On June 3-5, 2011, please take a moment to tell someone about Batten disease and how it can steal a precious child’s hopes and dreams. You can also donate to the Batten Disease Support and Research Association by visiting our website at www.bdsra.org. Every story and every dollar makes a difference. The cure depends on us...we depend on you.
A Deadly Disease with No Cure
Batten disease is a genetic neurological disorder that affects children and adolescents. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and unable to communicate. Presently, there is no effective treatment for the disease and the disease is always fatal.
About the Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. "Over 50% of our annual budget goes toward research, and more than 96% of our funding is provided through families of children with Batten disease and private contributions," said Lance W. Johnston, Executive Director. "In order to find, and fund the cure, we simply have to broaden our horizons and get more interest in helping these children, said Adina Ryan, Director of Development.
BDSRA has been supporting families with programs, services and research funds since 1987, and we encourage you to visit our website at www.bdsra.org or call 800-448-4570 to learn more about Batten disease and what you can do to help.
Brenna Colleen GreigJune 20, 1989 - September 21, 1997
"You will miss her." It was said with brisk but genuine sympathy...."Like a fibre gone from my heart."
"Do not marvel at this, because the hour is coming in which all those in the memorial tombs will hear his voice and come out...." John 5:28,29
Susan/Salynne©2011
Subscribe to:
Posts (Atom)