When someone is on borrowed time... you make the time.
Wednesday, July 18th, iHeartRadio stations in Washington DC will tell the story of Jamison, 8, of Montgomery County, who is one of just 200 people in the world living with a very rare, and fatal condition called Cockayne Syndrome. Also called Neill-Dingwall syndrome, the disease, which is characterized by impaired neurological development, impairment of the nervous system, sensitivity to sunlight, advanced aging and more, has no permanent cure and it's fatal.
The disease usually results in death within the first - or second - decade of life.
Jamison... is on borrowed time.
So, iHeartRadio's Toby + Chilli in the Morning Show, from 97.1 WASH-FM, made the time.
The show, which features Washington DC radio fixtures Toby Knapp and Chilli Amar, along with the show's Producer, Kala Simmons, who were each moved by Jamison's story, stepped forward to champion the cause.
"It's hard not to fall in love with Jamison the moment you meet her. Her smile and sass shine through and you can't help but smile right along with her," shared Amar. "She's a special little girl and I feel fortunate to have spent time getting to know Jamison and her family."
The show volunteered their time to emceed a gala fundraiser - the Bash for Cokayne Syndrome - at Rockville's Woodmont Country Club on a recent Friday night in June. The event, which feautred unique experiences, sports memoribilia, trips, adventures - and even a lease on a new car - raised thousands for the National Inititiave for Cockayne Syndrome, which works to educate people about the syndrome, as well as to make life better for families and patients living with the syndrome.
The show then spent a day with Jamison celebrating her 8th birthday at Bloomingdale's Tyson's Corner Center location, in Virginia, where she was pampered with a full makeover, including hair, makeup, nails and wardrobe before she walked the red carpet and went on a shopping spree of sorts.
Finally, the show shared lunch with Jamison and her family
"Jamison was loving every minute of her special day," revealed Amar. "She was in her element being pampered. Jamison loved modeling her hair, her make up and new clothes... and had a constant smile on her face."
Photos and video of the moments the show spent with Jamison that day, as well as audio from candid conversations between Amar and Jamison's mom, Nikki Herson Cohen, are featured in a video which celebrates Jamison's life - and which also serves to educate the audience as to what the very rare, fatal disease, is.
The video will be hosted and seen on all DC-area iHeartRadio station websites, and audio will be featured in special vingettes which will air on each of the five are FM stations as part of a one day "takeover" to raise awareness.
"We feel honored to play a small part in raising awareness and educating our audience about Cockayne Syndrome... but more importantly, we are so excited to introduce our listeners to Jamison,"
"Jamison's story is in itself an inspiration," shared Knapp.
"When you look at all she's been through, at 8-years-old, and when you see how her family gives so selflessly to make her life the best that it can be in the face of incredible odds, it just speaks to your soul. I believe we individually, and collectively, are better because of the moments we've spent with Jamison. She's pretty amazing."