Courageous Transplants

Bryson gets help from his cousin. Photo by Kris. J. Murante/D&C Staff Photographer

A few weeks ago, I had the pleasure of meeting two transplants to Rochester from North Carolina and one all the way from Taiwan.

They came to be nearer to lifesaving healthcare resources. They came here for family and for love.

These transplants found all that in Rochester. What they also found was a community on ice.

Before I share their story, think about something you’ve complained about today.

Maybe you had an ache in your back. Or the winter weather makes you not want to get out of bed. Or your co-workers, siblings, roommates, spouse, etc., is driving you crazy. Keep your problems. You really don’t have any problems. Instead, count those blessings. 

Thank you to Amanda, the courageous single mom of Bryson. Thank you for calling me to make sure I had everything for my story while Bryson was once again in the ICU. Amanda was apologizing to me for not keeping in touch. 

When I told her not to worry and how instead how sorry I was that Bryson was back in the ICU because of complications related to his CP, she just said – “That’s okay. That’s just how it is.”

I saw Amanda and Bryson about a week later at a routine checkup for my son’s asthma. Amanda gave me a quick hello, thanked me again and said she had to run, she had six other doctors appointments for Bryson. 

Sadly, Bryson died about under two years from the time this piece was published in the Democrat and Chronicle. I am glad I was able to have written this to preserve his memory. 

There is a little ritual performed by Gliding Stars students each time they take to the ice at the Webster Ice Arena. Each skater is escorted onto the ice with one or two volunteers as a straight line forms across the center of the rink. Some stand independently while others use the support of walkers and arm braces. At the cue of their skating instructor, they chant a cheer: “Can we skate? Yes we can!”

With the help of his family, friends and the larger community in Webster, this can-do spirit lives within the tiny body of 6-year-old skater Bryson Sparrin.

Bryson, of Webster, was born prematurely at 27 weeks with cerebral palsy. In 2010, he contracted hydrocephalus, or fluid on the brain, and had to have shunts placed within his brain to relieve the pressure. Already coping with speech delays caused by cerebral palsy, the shunts further curtailed his speech development. He can carry on a conversation and express himself with short sentences, gestures and with the help of an iPad application.

In spite of it all, Bryson wants to be like any other boy his age. Getting on the ice with Gliding Stars is one more way Bryson feels like the rest of his peers.

Gliding Stars was started in Buffalo in 1994 by a figure skater who wanted to make the sport accessible to people with physical, mental or emotional challenges. The Rochester Chapter, which meets weekly in Webster, currently enrolls 35 skaters and meets each Sunday afternoon from November through April. The season culminates with a choreographed ice show where the students can show off their moves.

According to Rochester Gliding Stars co-coordinator Christie Leszczynski, also of Webster, ice skating provides Bryson and other disabled children with many benefits. Physically, it helps strengthen muscles and improve stability. Children who are otherwise confined to wheelchairs or have limited ability to walk get a great sense of freedom when their legs can glide over the ice. Emotionally, skating and making friends through the program boost the child’s self-esteem.

It costs $700 for each child to skate to cover insurance, equipment and renting ice rink time. Gliding Stars makes the program as financially accessible as possible to students by charging them only $140 per season. The rest of the tuition is offset by grants, community fundraisers and the dedication of volunteers.

As a skating instructor, Leszczynski modifies skating moves to match students’ capabilities. Some children master basic skills such as alternating feet and skating in a circle with a group, while others learn basic figure skating moves like spins and jumps.

The Sparrins moved to Webster in 2010 from Ashville, N.C. Here, they discovered a welcoming community, support from family and a dedicated team of 10 doctors at Golisano Children’s Hospital at Strong to treat Bryson.

When one of the doctors recommended that Bryson try out Gliding Stars, his mother was initially hesitant.

“I first thought, ‘There is no way Bryson can ice skate.’ But the first time he tried it out, I saw a huge smile on his face. Now, skating and being with friends on the ice is the thing he looks forward to most each week,” said Amanda Sparrin, a single mother.

Bryson gets around in a powered wheelchair. He is unable to stand or walk on his own. But because of specially designed ice skates and a walker with a sling seat provided by Gliding Stars, Bryson can skate. His beaming smile shows the sense of satisfaction that brings.

Accompanying Bryson on the ice is his cousin, 9year-old Ruby Salamone, a fourth-grader at Schlegel Road Elementary School.

Ruby, who was adopted from Taiwan by Amanda’s sister in October 2010, came to the ice with her own challenges of adjusting to a new family, a new country and a new language.

The skater-volunteer relationship has been mutually beneficial for Bryson and Ruby. Bryson looks up to his new cousin as a role model, and Ruby gains self-confidence at being able to help her cousin while making new friends, said Amanda.

“Ruby really understands Bryson’s nonverbal cues. When they are on the ice, she monitors his mood to help him feel successful. Having that family connection of his cousin skating with him every week is a big bonus in Bryson’s skating. They really love each other,” said Amanda.

After spending the first 86 days of Bryson’s life in the Neonatal Intensive Care Unit, Amanda knows the ins and outs of what it takes to care for premature babies. When Bryson was released from the NICU, Amanda had to be trained how to change Bryson’s feeding tube, operate a breathing machine and manage his seizures.

Amanda said she remains in close contact with the nurses who cared for Bryson. Now, to make that support come “full circle,” she is studying at Monroe Community College and hopes to work as an NICU nurse to care for premature babies and their parents.

“For those parents now dealing with babies in the NICU who are living through those first days knowing their child has a life-altering disability — I lived that. I know what they are going through, and I want to become a nurse because I can

give them hope,” said Amanda.