It is easy to see Nico Santiago’s strength when he’s hitting baseballs with his dad. It is with this strength that he battles neuromuscular disease.
Nico, from Irondequoit, was born with congenital myasthenia gravis, a rare chronic neuromuscular disease that causes weakness throughout his whole body. He was sick when he was very young, dealing with frequent respiratory infections and multiple hospitalizations. His parents, Fina and Israel, thought they going to lose him several times.
Nico has spent many weeks in the Golisano Children’s Hospital at Strong Pediatric Intensive Care Unit fighting off viruses that wouldn’t cause much more than a cough in most kids. Thankfully, over the years, Nico grew stronger. He began playing Challenger baseball at the age of five.
“There really isn’t an alternative to Challenger,” says Fina. “Kids with physical disabilities really cannot be part of school activities, especially if they use a wheelchair or walker. But even with Challenger, not having the right type of field to be able to maneuver over grass or rocks can be very difficult. That’s why the new Miracle Field is so important - these kids can move everywhere – the sky’s the limit!”
Today, Nico, at age 16, is a junior at Eastridge High School. His long-term prognosis is positive with mobility remaining his most significant obstacle. In addition to Challenger baseball, Nico also plays for the Rochester Rookies, a Junior Wheelchair and Ambulatory Sports program. He can’t wait for construction of the new Miracle Field to be completed.
"I am really looking forward to seeing this field unify people together. It is not just for people in wheelchairs, it's for people who can also walk. I can tell my friends, "Hey let's go out and play some baseball.’ I can do that with this field," said Nico.
Brennen Smith has been playing baseball since the age of 12. It’s a game he absolutely loves. The left-handed Webster resident, who joined Canisius College this fall, led the Perfect Game Collegiate Baseball League last year with 40 strikeouts and pitched for both Webster Thomas and the Rochester Rage Travel Team.
When he was just a toddler, Brennen met Ron Kampff, who coached his older brother, [insert name]. As an Eagle Scout, Brennen began working with Ron’s Challenger baseball team, and became a “buddy when he was just 14 years old. Buddies play a critical role in creating a safe environment for Challenger players. They assist the athletes in the areas of batting, base running and defense, as needed.
“In high school, baseball was very serious,” Bennen says. “Helping as a buddy with the Challenger team is so much fun. I help the players hit, run around the bases or stay with them in the outfield.”
Brennen routinely volunteers at two Challenger games each week, and he gets great joy from helping others. Giving back is simply a part of who he is. Both of Brennan’s brothers are Eagle Scouts his family taught him about the importance of giving back. “I find great joy in helping other kids,” Brennen says. “Sometimes you have to make sacrifices to help out, but it’s worth it.”
“Being part of Challenger baseball really feels like we’re helping to bring our community together,” Brennen says. “I’m helping these kids feel like just like normal kids.”
Mary and Keira of East Rochester are like any other kids – they love to be outside, they want to play with their friends and most importantly, they want to be treated just like everybody else.
Both Mary, age 10, and Keira, age 6, were born with severe arthrogryposis, a condition in which their joints don’t move as much as normal and may become stuck in one position, completely or partially restricting movement. Often the muscles around these joints are thin, weak, stiff or missing and extra tissue may form around the joints, holding them in place. Arthrogryposis is an extremely rare disorder occurring in 1 out of every 3,000 live births.
Both girls have complex medical needs - they use gastrostomy tubes for feeding, tracheotomys to ease breathing and wheelchairs for mobility – and neither will ever walk, talk or play without adaptations.
While there is no cure for arthrogryposis, quality of life can be greatly enhanced for kids like Mary and Keira with physical and occupational therapy, a focus on psychosocial and emotional needs to enhance self-esteem and surgical interventions. Programs like Challenger Baseball are specifically designed to give kids just like Mary and Keira the chance to play baseball and be accepted for who they are and what they are able to do.
The girls started playing Challenger Baseball a few years ago. Mary's favorite part of baseball is being helped around the bases in her gait trainer at a very fast pace and
Keira loves being able to spend time at the games with her friends. “Aside from therapy, Challenger is the one activity lets them be active just like any other kids,” says their mom, Chaney.
Chaney is anxiously awaiting the Miracle Field and fully accessible playground to be built. “They will be able to participate with other wheelchair-users and ambulatory people without discrimination, and be able to use their gait-trainers and wheelchairs freely, she says.”
“Being part of Challenger Miracle Field provide me with a sense of community and support,” says Chaney. “And everyone – people with all sorts of disabilities, sensory needs, mobility issues, any kind of disability – will benefit from this!”
Kirstyn knows first hand how important it is for all of us to have the same opportunities. Kirstyn is legally blind. She has been battling her loss of eyesight since she was 8, when she was first diagnosed with uveitis or arthritis of the eye. Despite the deterioration in her vision, she was able to function in a sighted community until her condition worsened significantly about a dozen years ago. A former teacher at Our Lady of Mercy High School, she had been involved in a number of programs with the Association for the Blind and Visually Impaired, and it was through that organization she became aware of Beep Baseball, the adaptive version of America’s national pastime for people who are blind or visually impaired.
The one-time gymnast, softball player and cheerleader is now team captain of Rochester Red Wings Beep Baseball team. “I wasn’t fearful that I might get hurt playing Beep Baseball,” Kirstyn said. “I was afraid that I would look stupid. I was fearful of swinging and missing, of not being able to find that base or fielding a ball hit in my direction. But I’ve discovered those fears are foolish; that it’s OK for me not to do it perfectly or right. It’s OK to fail, as long as you’re willing to keep trying.”
Kirstyn has discovered courage she didn’t know she possessed. She’s learned to trust herself more, while also relying on the help of others. The experience, in her words, has been both terrifying and exhilarating. “I spent a fair amount of my life resisting the fact that I was legally blind,” she said. “I worked very hard to operate in a sighted community without people noticing my visual impairment. Beep Baseball has taught me that it’s all right to embrace the fact that I’m different.”
Kirstyn has become a fierce advocate for Challenger Miracle Field. “This is important for our community,” she says. “People who are blind or have other disabilities can play baseball and through that sport we can challenge ourselves. Each of us can take those fears and obstacles we have in our lives and learn how to deal with them.”
Kirstyn lost the last of her light perception after a final surgery in New York City in December of 2010. The hope now is that a nano microbiotic system will be developed that will bypass the eye and connect the brain to vision glasses as a possibility for regaining her sight.
For now, though, Kirstyn continues to be a role model to her teammates, her kids and the entire community. "Nothing is impossible,'' she says. "We make accommodations but we can do it.” She’s taught herself—and us—to see no boundaries, only possibilities.
Karen had no major issues during her pregnancy with her daughter Lily, so she and her husband Rodger were surprised when Lily was diagnosed with Down Syndrome at birth. Lily grew into a healthy toddler, bringing joy and smiles to her family.
Shortly before her third birthday, Lily began a course of antibiotics for an ear infection. Karen noticed that the blood vessels in Lily's eyes had broken, and she had a high fever and bloated stomach. Her parents decided to take her to Golisano Children's Hospital at Strong and tests revealed Lily had an enlarged liver and spleen.
Lily was diagnosed with acute lymphoblastic leukemia (ALL) and began her first chemotherapy treatment immediately. ALL is a type of blood cancer that starts from white blood cells in the bone marrow, the soft inner part of bones. It is the most common malignancy diagnosed in children, representing more than a quarter of all pediatric cancers.
Every three months, Lily goes to the hospital for treatments, undergoes daily chemotherapy at home, and participates in a variety of home-based therapies – physical, speech, occupational and music. Her parents expect Lily to finish up chemotherapy treatments in May of 2017.
"She handles things better than most adults," Karen says. "Because she's so young, it's become her norm, and she tries her hardest to keep up with typically developing kids.
Lily had been home schooled and not able to get out and socialize as much as other children, with her brother Jack, and a just few close friends as regular playmates. The family learned about Challenger baseball from Derek and Danielle Donolli, whose son Weston plays on the Webster team. They drive from their neighborhood in Gates so that
the two friends can play baseball together.
"Challenger baseball has benefitted our entire family," Karen says. "We have regular opportunities to talk with other parents who know what we're going through and Lily gets to play with other kids. It's nice for her to play with kids on same level and without the same level of competitiveness as typical sports."
Lily began pre-kindergarten in an integrated classroom this fall at Rochester Childfirst Network and is looking forward to the start of Challenger baseball. "Our community is so fortunate to have Miracle Field," says Karen. "Lily and others will be able to build their confidence through teamwork and personal achievement as they utilize this great local resource."