Jemma Morgan, took their seven-year-old daughter, Julianne, to see Santa. Julianne has Cockayne Syndrome, which makes it difficult for her to walk and talk. She is sensitive to sunlight, cold and heat.
“This year was an amazing experience; Julianne loved it!” said Tompkins “She was hesitant at first, but she was allowed to take her time. She walked right up and started talking. She even said ‘Merry Christmas’ –She has never said that before and we probably will never hear that again.”
The average life expectancy of someone with Cockayne Syndrome is 12 years.
“There is no rush. If it takes 5 minutes or 20 minutes that’s fine,” continued Tompkins “That’s why the waiting room is so important –they don’t even realize they’re waiting. For Julianne it’s the wait -many of these kids don’t understand having to wait, and it is so loud in the mall, and the staff is more worried about moving the line and getting the money for the photo than that the child’s experience.”
Tompkins later told the story about the boy who visited Santa right after Julianne who took nearly 30 minutes to play with the train before finally warming up to the ‘big guy’“.
“You could never do that in a mall,” commented Thompson.
“It is incredible to be able to give them their ability to tell Santa their wishes, even if they are non verbal,” explained Nicole. “We can provide that experience and that filled my heart,”
“It was great for Julianne and also great for us as a family since we don’t get that experience in a normal Santa situation,” said Thompson. “She was able to get acclimated and really enjoyed herself.”
This year, over 40 families participated in Sensitive Santa at Mountain Yoga and every family received a photo and a gift. The program is completely free and is supported by donations and volunteers. Tokach related that the hardest part is turning away volunteers in order to keep the event low key and void of unnecessary stimulation for the children.
“We get inundated with people who want to volunteer and its hard to say no.” said Tokach “We have to limit the number of people in the room, otherwise it becomes a zoo, which is what we try to avoid.”
Both Tokach and Ash are amazed, not only by the outpouring of volunteerism, but by the gratitude of the families and the selflessness of the volunteers. They say it is a testament to the kind of people who live on the mountain.
“Families come and thank you for the first picture of their child with Santa after trying for twelve years. You actually feel the love in that room. It’s breathtaking, and it reaffirms how important this is to people. Unless you’re in it, you don’t realize. I’ll never forget it and I don’t even know them,” noted Tokach.
“We don’t recognize the good we have in this community enough, If you can change the world for one person it kind of makes your life worthwhile –It’s an amazing feeling because you know you changed someone’s world, and I never knew I had the power to do that,” added Ash
When asked if she would continue the program into 2017, Tokach had little doubt that she would, despite the tremendous amount of time it takes to coordinate so many people around a time of year that has “hectic” as its baseline. “Time is relative, you do with it what you choose. The ripple you want to put out, is what you put out.”
If you would like to learn more about the program or view the photos from the afternoon, or want to donate for 2017, visit www.Sensitivesanta.org