Today, you’d be on February 2nd, 37
I’ll take a deep breath, shed a tear, then broadly smile,
No shared hug, just dear memories, while you’re now in Heaven.
You had soft blue/gray eyes, warm heart, empathy & your own individual style,
A physical body that was progressively letting you down
But your own inner strength, was the strongest constitution I’d ever know.
While hearing doctors’ unencouraging news amazingly never made you frown,
You’d let out your frustrations quiely playing your video games for an hour or so.
Now, fast forward to almost 17 years since our last goodbye on this Earth
With time passing so swiftly, almost like a windy day,
I will celebrate you, our cherished years shared since your birth
And, if you by chance,can hear my words, I love you forever, is all I can say.
Sixteen years ago today you closed your eyes
With a smile you peacefully passed.
My then sudden horror and tormented cries
Feeling angry that your die was unfairly cast.
You left this Earth too early an age
So much for you to accomplish that could not be
Not able to continue your dreams and engage
Nor graduate from College with your degree.
Yet, time goes on and my aches are more like an ocean’s tide
Holding onto shared love and memories bringing big smiles.
I’ve learned to live with strength & joy having you as my guide
Living positively which you modeled through your health trials.
You are sixteen years gone now and missed
Living dearly in my heart and soul.
Twenty years grateful with too much to list
Even with my heart having an eternal hole..
The Keith B. Hayes Foundation was created to honor and memorialize Keith, who passed away on September 14th, 2007 at the age of 20 due to a genetic progressive muscular/skeletal disease and to continue his spirit of giving to others in need.
The Keith B. Hayes Foundation has been supporting research first headed by Dr. Dalvatore DiMauro and now spearheaded by Hasan Orhan Akman, PhD, Associate Professor of Neurology at Columbia University Medical Center for 13 years. From a past muscle biopsy, it was determined that Keith had a rare polyglygogen storage disease. Dr. Akman's research is now beginning clinical trials regarding gene therapy for the RBCK1 deficiency which Keith was later diagnosed with.
Partnering with the Wheelchair Foundation, Danville, CA, in 2021, The Keith B. Hayes Foundation was able to have a container of over 250 wheelchairs delivered to Yad Sarah to be distributed to their centers throughout Israel. .Keith was wheelchair bound for the last 1 1/2 years of his life.
BRIDGES , a disability and service organization in Rockland County, NY, was where Keith had been trained to be a mentor. Before COVID 19, BRIDGES gave out annually "The Keith B. Hayes Spirit of Mentoring Award". The Keith B. Hayes Foundation continues to support BRIDGES and their clients with disabilities to gain their independence.
The Children's Cardiomyopathy Foundation was founded by Lisa Yue who lost 2 young sons due to cardiomyopathy. Keith at 20 1/2 years of age passed away due to this same affliction. The Keith B. Hayes Foundation supports this non-profit's hope in saving children's lives.
JAWONIO, a disability and service organization in Rockland County, NY is our newest Grantee. The Keith B. Hayes Foundation donated a video game system that is helping adult clients with social and communicative skills. Keith often played video games to relieve his frustration to his dealing with his physical deterioration.
We are so pleased that The Keith B. Hayes Foundation along with the Wheel Chair Foundation have been able to donate over 250 wheelchairs to the Israeli non-profit, Yad Sarah, for their lending program to help those in need of mobility and independence. .
. Please view this short video from Yad Sarah with someone receiving one of the wheelchairs for a friend. Thank you to all our supporters to The Keith B. Hayes Foundation because without you this would not have been possible.
What would have been Keith's 35th Birthday - and recognizing how much he is remembered and that we can continue his legacy of giving.
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