When the Preston and Steve Show came to WMMR in 2005, Chris helped to create and build our very first website. Of course, we always appreciated his abilities and support of our show.
Chris and his wife, Kasey, are facing an enormous challenge. Their daughter, Robbie, was diagnosed with an INCREDIBLY rare disease, called SPG-47, or hereditary spastic paraplegia type 47. It is SO rare, in fact, that there are only 11 documented cases in the world. ELEVEN. The only other documented case in the United States comes from a family in Horsham, PA, the Duffys.
SPG-47 causes a decline in everyday cognitive and physical functions, but YOU can help to change Robbie's future.
How to donate: http://www.curespg47.org/donations.php https://www.gofundme.com/ResearchforRobbie Robbie's smile comes easily, and often, despite having Hereditary Spastic Paraplegia type 47 (SPG47) , a slowly progressive neuro-degenerative disorder. She smiles, with few words to actually say why. She smiles with other children and at other children, though she can't quite keep up with them.
Please consider making a donation via the family's GoFundMe.com page, where you can learn more about Robbie and how you can help.
Robbie’s smile comes easily, and often, despite having Hereditary Spastic Paraplegia type 47 (SPG47) , a slowly progressive neuro-degenerative disorder. She smiles, with very few words to actually say why. She smiles with other children and at other children, though she can’t quite keep up with them. We live for her smile. Her positivity is unwavering, but her future is insecure.
Last year, Chris and his wife Kasey, along with the Duffy family, were featured in an issue of People Magazine and on People.com.
Toddler Best Friends Struggle with Same Disabling Disease as Parents Search for a Cure: 'We'll Never Give Up'
When Molly Duffy and Robbie Edwards, both 3, met in person for the first time at Boston Children's Hospital in November, it was like they'd been best friends forever. The tiny tots, who both have light brown hair, sparkling blue eyes and infectious, toothy grins, could pass for sisters.
Toddler best friends struggle with same deadly disease as parents search for a cure: 'We'll never give up' https://t.co/wbYxjty2Cv
The Edwards' goal and the Duffys' goal is to spread the word and educate people about this and other rare genetic diseases.
Article and photos and video via People.com:
Toddler Best Friends Struggle with Same Deadly Disease as Parents Search for a Cure: ‘We’ll Never Give Up’