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SEO: Sheila Hayes researches gene mutation to help others Sheila Hayes gives back with research and donations
Sheila Hayes embraces the motto of her foundation in daily life Sheila Hayes never fathomed saying goodbye to her son at such a young age. It was not until her son exhibited physical and learning disabilities that this sadness became a reality. There was no preparation, Hayes said. Keith showed symptoms early on in life; however, no one was prepared for how abruptly he passed. He was brought on earth with the expression the good die young, which fits my son very much, Hayes adds. Her youngest son Keith died of polyglucosan body myopathy, a degenerative disease that progressively worsens as it goes on, at 20 years old. Instead of pitying herself and allowing

I tried to be his voice because he died too young to have his own.
-Sheila Hayes

others to feel sorry for her loss, Hayes channeled her sadness into a foundation in Keiths name, which soon became his everlasting voice. I turned around the situation, Hayes said. I tried to be his voice because he died too young to have his own. Hayes refuses to be bitter; instead, she embraces the motto of the foundation, the spirit of giving, and realizes that because some things in life are unfixable, one should solely focus on the positives, what we can fix. Keith continues to inspire others Keith became a mentor for others with similar disabilities through the Internet. Keith reached out to individuals he did not even know. You can have a voice and you dont have to be seen on the Internet, Hayes said. He wouldnt be judged. (more)

SH, 2 After only living with a roommate for two weeks, Keith made an everlasting impression. The roommate still contacts Hayes and keeps a photograph of Keith by his bed, which to Hayes is absolutely, absolutely amazing. One of the boys Keith mentored over the Internet, specifically Facebook, said he would not have been able to get through his treatments if it had not been for Keith and his inspiration. The Keith B. Hayes Foundation To live up to the motto of the Keith B. Hayes Foundation, Hayes and her family give back as much as they can. After Hayes son Adam, 33, suggested the family start a foundation in Keiths name, the family felt destined to make him proud. The Keith B. Hayes Foundation gives scholarships to students with both physical and learning disabilities. The foundation also donates wheelchairs for individuals who cannot afford these necessities. In addition to these generous donations, the Hayes family also gives a mentor award in Keiths honor. Finally, the family donates to a childrens cardiomyopathy foundation. Friends and family support the foundation and feel strongly about all it represents. Meryl Schreiber, friend and co-worker, believes this foundation allows for tremendous opportunity. Everybody deserves a fair break and handicap people more than ever deserve opportunities. This charity allows them things they might not necessarily be able to afford on their own, Schreiber said. (more)
The Keith B. Hayes foundation helps individuals rise to the challenges of life. Photo source: http://thekeithbhayesfoundation.org/

SH, 3 Hayes explains the necessity of giving to others in need. It has changed me as a person. I am much more of a giver, Hayes said. The foundation will continue even when Im gone, it stills goes on when Im gone, and that makes me feel very good that we can help others in our own small way. Fundraise, fundraise, fundraise The Hayes family has many fundraisers and events to raise money for its organization throughout the year. The family is low-key in its endeavors, however, because it understands the troubles in our economy. We are for something small. In todays economy you cant ask for big bucks because people are watching their money. People are always giving and we dont want our hands to be out, Hayes explains. Previous fundraisers and events include a wine tasting, various raffles, a baseball game and a silent auction. This auction was the most difficult according to Hayes because it was on Keiths 21st birthday at the familys home. Giving back to research Hayes and her husband are thrilled to be involved in a study that could potentially help other families in similar situations. They both are carriers of an extremely rare mutated gene. Regardless of how Keith ultimately received the mutation, doctors are now able to test the gene since they have identified it. Luckily for Hayes, she found a world medical researcher Doctor DiMauro that can aid her family and other individuals in a similar struggle. Scientists can now do stem cell research and ultimately strive to find a cure. (more)

SH, 4 Because of the rareness of Keiths diagnosis and illnesses, Hayes felt unable to donate to research. However, Doctor DiMauro presents her family with a wonderful opportunity to share her story and test the gene. Hayes believes that through testing she can help others. One day someone elses family will not have to go through that.
Hayes welcomes the opportunity to share her story with others. Source: Sheila Hayes from Facebook.com

Their family will not have to go through this. They will be able to add life to this person, she said.

Hayes has remained strong throughout all her struggles because she knows life goes on. You have to be a survivor in life, she said. You can choose to sink or swim, and I refuse to sink and I refuse to stop laughing and I refuse to stop having fun because Keith wouldnt have wanted that. ###