By Kristine Thomas
A year ago, Amanda and Anselm Sura of Silverton took their service dog, Alonya, to a training class in Wilsonville where Alonya learned how to properly travel on an airplane.
“I remember thinking we will never be able to use this skill,” Amanda said. “There was no way our family could ever go on a trip and take an airplane.”
Skip ahead a year and Amanda and Anselm are quietly yet excitedly counting down the days until they and their children, Aubrey, 10; Aaron, 7; and Andy, 5, go to Walt Disney World and Give Kids the World Resort.
What makes this adventure even more meaningful is Amanda’s friend Caitlin Shockley and her husband, Jeremy, and their children Ramona and Ezna are going on the same vacation in November.
“This is amazing for us,” Caitlin said. “We couldn’t even go to Oktoberfest. We tried to go but had to leave. People don’t understand Ramona’s needs and she often singled out for her disability.”
Both Caitlin and Jeremy Shockley and Amanda and Anselm Sura have second-grade students with special needs. Their children were granted wishes by the Make a Wish Foundation. To qualify for a wish from the foundation, they had to fill out paperwork on line, and have their children’s doctors indicate they qualify – that their child has a life threatening condition.
“We couldn’t have done this trip without the Make a Wish Foundation because we couldn’t make the handicap accommodations on our own,” Amanda said.
To keep the trip a secret for Ramona, Jeremey anc Caitlin use the code word “going to the toilet” instead of going to Disney World.
Eight-year-old Ramona Shockley has Wolf-Hirschhorn syndrome, a rare chromosomal deletion affecting 1 in 50,000 children. It causes a variety of special needs.
“In Ramona’s case, she has an intellectual disability, short stature, hypotonia, epilepsy, diabetes insipidus and kidney disease,” Caitin said. “She is a great kid and such a trooper.”
Seven-year-old Aaron Sura has hypotonic cerebral palsy, epilepsy and cortical vision impairment. He loves to be around people and his greatest motivation is hugs.
Both families live with the underlying fear that their child could go to sleep and not wake up.
It takes a great deal of time and energy for Amanda and Caitlin to get their children from point A to point B. And when they do go places, they often get second glances and stares.
What makes the trip to Disney World exciting for both families is they get to feel special and treated like royalty. From the minute details to the grand plan, the Make a Wish Foundation makes sure families can just relax and enjoy time together.
“We deal with day-to-day stress and making decisions,” Amanda said. “During this trip, we get to relax because everything is taken care of for us.”
The trip is also a celebration of the little things in life, with neither family taking any moment with their children for granted.
Because of their children’s disabilities, there aren’t playdates or family trips. They celebrate when a new skill is learned and when there are good days.
Each family has passes for three days in Disney World; one day in Sea World and two days at Universal Studios. They receive special buttons that takes them to the front of the lines and there are rest stations, if needed.
Caitlin and Jeremy are so excited for the trip to Universal Studios to visit the Wizarding World of Harry Potter that they reread the Harry Potter books.
“This trip is a once in a lifetime opportunity for our families,” Anselm said. “We couldn’t afford this trip if it weren’t for the Make a Wish Foundation. I am overwhelmed at everything they have done for us.”
