Mara here. Have you heard of Tay-Sachs Disease? I hadn’t until I met Felicia Kemp online and talked about her family’s struggle with the disease. In order to prevent other families from struggling, the Kemps have started the online campaign #HikeForGrayson to spread awareness and raise money to find a cure for the disease.
Read below about the Kemps, Tay-Sachs, and the campaign.
Nature is a an awesome healer. Unfortunately, for some diseases there is no cure, and in that case, nature is an awesome comforter. Felicia Kemp and her family have to rely on nature to comfort them as there is no cure to heal her 3-year-old son, Grayson.
Grayson has a rare condition called Tay-Sachs Disease. According to the Cure Tay-Sachs Foundation, it is a mutation in the Hex-A gene. It causes the body to have no or very low levels of Hex-A enzyme. That enzyme is needed to break down fatty waste products. The Hex-A gene is especially important in nerve cells in the brain. Tay-Sachs disease is fatal and often results in death by age 3, the foundation says.
Although there is no treatment or cure for Grayson, Felicia wants to raise awareness and money for the Cure Tay-Sachs Foundation so other families do not have to suffer. The campaign, #HikeForGrayson officially kicks off today (June 24, 2017).
The #HikeForGrayson campaign hopes to raise 1,000 donations for the foundation by Labor Day.
To participate in the campaign, you can make a tax deductible donation to the Cure Tay-Sachs Foundation (CTSF) (curetay-sachs.org); go on a hike and take a picture; post your photo on social media and use the hashtag #HikeForGrayson; tag @curetaysachsfoundation; and challenge at least two friends to “hike for Grayson.”
“If we can get at least 1,000 people to donate, get outside to hike for Grayson, AND challenge others to do the same, that’s the biggest win! Every dollar is valuable, so the sky’s the limit!” Felicia said via email.
Felicia wrote on her blog, Family Trail Time – A Mama’s Hiking Guide, that hiking with his family is the one thing Grayson has always enjoyed. She wrote that even though getting out is getting harder and harder, they still do it as a family for Grayson.
Grayson has never walked and needs to be carried while they hike, but they take him outside because they know it helps him.
“I think all of us are born well connected to the earth and nature, and it’s only after time that the activities of our lives pull us further and further away,” Felicia wrote in her email. “For Grayson, the only thing pulling him away (Tay-Sachs) is pulling him away from everything in this life. Hiking is a way to keep him connected to earth, nature, and his family. When he could better communicate, he would get so excited being worn on hikes, kicking and giggling whenever a breeze would blow, engaging with smiles as his older brother talked to him about nature, and always taking great naps on my chest when we were on longer trails. We hope that somewhere in there is that same little boy, loving every moment, each time we take him out on a hike.”
Hiking also helps the Kemps cope with Tay-Sachs as a family, she said.
“When Grayson is well enough for the four of us to get out, there are no distractions of work, school, electronics, etc. It’s just us, exploring as a family, getting fresh air, sunlight, and time with each other,” she said.
Felicia wants to encourage others to get out and enjoy the therapy of nature. On Family Trail Time – A Mama’s Hiking Guide, she writes that she wants other get outside, see and explore the places that Grayson will not be able to.
In addition to getting people outside in nature Felicia said she hopes the #HikeForGrayson campaign will spread awareness about Tay-Sachs.
“First and foremost we want people to have some awareness when someone says ‘Tay-Sachs.’ Most people have never heard of it. Most doctors have never seen it,” Felicia said in her email.
“It’s rare but even still, 1 in every 250 people are a carrier. The more people that are able to discover that they are carriers before having children, the fewer children there will be suffering from this disease,” she said.
“I’d also love for the campaign to help soften people’s hearts. Better appreciate the wonderful things in your life and don’t judge others. On a recent hike I was wearing Grayson when another mother said under her breath in passing, ‘That one’s a bit big to still be carried.’ I only wish my son could use his legs to walk like other 3-year-olds,” she said.
No donation is too small or hike too short. You can even stroll around your neighborhood, she says on her blog. The goals are to spread awareness and find a cure for Tay-Sachs.
Although Grayson’s time and abilities are limited, Felicia said he has made a huge difference in her and her family’s lives.
“Every parent grows with each child that becomes part of their life. I don’t even know how to explain just how much he has made a difference in my life,” she said in her email.
“He has always been an easy going baby, from pregnancy to birth to nursing to now. When I break down from it all, our skin-to-skin contact brings me more comfort than I think I could possibly ever give him. I am not the mother I was at his birth. My vocabulary, knowledge, wisdom, advocacy, and ability to care for others have all grown exponentially. Bearing the weight of his diagnosis has taught us how to endure more pain and less sleep, and to become more comfortable with death.”