Meet ninth grader Emily Johnson from Damascus, Ohio who is on a mission to teach people about cerebral palsy. Emily’s cerebral palsy occurred as a result of a premature birth. She was born at only 1 pound, 12.5 ounces and the lack of oxygen to her developing brain caused her cerebral palsy. But she doesn’t want your sympathy.
Rather, she wants your understanding. Emily’s mom, Amy, was told that she would probably never walk or talk and that she would be wheelchair bound. Today, instead, Emily walks with difficulty and uses crutches when necessary.
The reaction she has gotten from those around her has been the most difficult part of dealing with her disability. As Amy said, “The kids were great when they were little. They jumped to help her if she needed anything.” But as Emily got older, she started to be bullied. Today, she is enrolled in an online school where she is on the honor roll. She plays catcher on a Challenger League baseball team, she is part of her Salem church and she has an online friend from Las Vegas who also has cerebral palsy.
She said, about the reaction she gets from others, “People freak out, and I hate it when they do that. It’s just a disability. You cannot catch this. You can shake my hand. You can talk to me. I am a human. It’s just cerebral palsy. It’s not going to hurt anybody.”
As her mom added, “There’s nothing wrong with her brain. They’ll ask me what’s wrong with her, and I’ll say, ‘Ask her. She’ll tell you.”
Emily hopes to educate people and she hopes, as an adult, to become a physical therapist or a motivational speaker.
The Mississauga Marathon that will take place on May 4 will have some amazing runners. Included in this list if Joanne Strang, 61, who has cerebral palsy. She will be doing the 2 km event as a member of Team World Vision Canada.
Strang was asked to join the run by her colleague at World Vision, Nellis Jacob-Tritto. Strang was surprised by the invitation. As she said, “I never would have thought that anyone would even think to ask me. Nellie told me, ‘Whatever you do, I’ll do along beside you.’”
“Being invited to join Team World Vision, even though I am differently-abled, means a lot to me. I have worked at World Vision for 40 years. I care deeply about the work we do and the children we serve.”
At 11, Strang had five operations to help her to deal with her cerebral palsy. Although she is, at times, required to use a wheelchair, she won’t be able to do so during the 2k. She is going to try to walk the entire 2k. She has begun training by walking the hallway of her condo and she has joined the early walkers at Erin Mills Town Centre on Saturday mornings.
As she said, “Two kilometres will definitely be challenging for me. But every meter I complete will make a difference in lives of vulnerable children. I want to raise $1 for every metre I complete. My fundraising goal is $2,000 for my 2 kilometre walk.”
One little girl in Lubbock, Texas just received quite a treat. Kira Berry, age 4, has cerebral palsy. Her parents were originally told that her physical and mental age wouldn’t surpass 5 months. But this has not been the case, and her parents have been constantly pushing her and assisting her to do and be more.
Recently, AMBUCS, the American Business Club, arrived at her house with a new Tryke. AMBUCS provides mobility to kids with disabilities by offering therapeutic bikes and other riding vehicles. Kira’s parents, Chris and Tiffany, were part of the surprise. Chris and Tiffany adopted Kira. As Tiffany said, “We didn’t originally request a special needs child. But we started volunteering with an organization called Night Owls.”
Night Owls offers babysitting services for children with special needs. Chris and Tiffany heard that there was a little girl who needed a home. They first saw her when she was nine months old and they adopted her when she was one and a half. As Chris said, “Once we found out she was special needs we thought… God would have it this way and knew she was our daughter. It didn’t really matter what she had.”
“We couldn’t imagine our lives without Kira,” Tiffany says. “She’s determined and fun and smart and just a joy.” And now she is blessed with a new riding vehicle to help her with her mobility.
When Canadian freestyle skier Alex Bilodeau won the gold, it was his brother, Frederic, with whom he immediately wanted to share his joy. Diagnosed with cerebral palsy at a young age, Frederic has had his fair share of triumphs. ““Just like you or I, he has dreams and most of them are not realizable to him but he does dream about it, he talks about it and he never complains that it’s not realistic to him. Every day I feel very lucky to be a normal person that has the chance to go after his dreams, and he doesn’t have that chance. So out of respect to him, I need to go after that and with his motivation he would be four-time Olympic champion. It’s crazy the motivation that he takes and every step is very hard for him. In life, I have an easy path and I need to go out there and do the best I can just out of respect to him.”
Alex further explained, “He lives his dreams through me. (Two gold medals) is the least I can do, he’s my every day inspiration.”
This is the second gold medal Alex has won. The first was in Vancouver, four years ago. Of his success he explains, “When I’m on the hill (Kingsbury) is in my mind and he’s pushing me to be a better skier, but outside of the hill, whether I’m in university or training or whatever I do in life, my brother is my every day inspiration.”
Hercules Stergiou was born with cerebral palsy. But that hasn’t stopped him from thriving at the mainstream Bowmore Road Junior and Senior Schools. So successful has his integration been that Thelma Sambrook, school principal, decided to write a story about his first year in school. This has now been published into a book called “All About Me – Hercules.”
It wasn’t easy in the beginning. Hercules’ mom, Kristina, recalled how scared she was to take her son to school for the first time. She told CTV Toronto, “It was very scary. I think the biggest fear for us was kids picking on him and him not being accepted.”
But he really has thrived. And thus the idea emerged for the book. As Sambrook explains, “I wanted it to be a positive story so that all families felt that school and kindergarten was a great place to be no matter what the child’s abilities were.”
Sometime later there was a celebration held at the school about Hercules’ story and the book launch with a ceremony at the school. Dad Dimitrios commented that his son’s story can really be a “powerful lesson” on acceptance. He added, “disabilities don’t make children different — it’s just what you see. Everybody is normal if you give them a chance.”
Some of the profits from the book will be donated to Toronto’s Hospital for Sick Children where Hercules goes twice a year to get injections in his legs to help his muscles grow.
Hannah Diviney, 14, has not let her cerebral palsy get in the way of her goals. A student in Australia at Sylvania High School, she has taken part in a united climb of 9.2 kilometers up Mount Kosciuszko. The climb is called the Krazy Kosci Climb and it took place on February 22. Hannah, who uses a wheelchair and walking frame, made this her goal to raise money to buy specialized gym equipment and a gym program for other children with cerebral palsy.
She raised more than $10,000. As she said, ‘‘At first I thought it was completely nuts, but now we’re working with the Cerebral Palsy Alliance to build as much momentum for it as possible.’’
AS the Krazy Kosci Climb website explained, “The Krazy Kosci Klimb is not only an exciting challenge, but an important fundraiser for Cerebral Palsy Alliance.Funds raised from the challenge will go towards supporting and expanding our sports and recreation programs at Cerebral Palsy Alliance.”
Born with cerebral palsy, Janae Hope Jones has had tremendous support and guidance from her talented father. Ollie Jones IV – an expert in engineering and business – manufactured specialized physical therapy and durable medical equipment for people with cerebral palsy through his company, Janae Designs.
Jones met individuals and organizations that lacked the financial resources for medical equipment and services that enhance one’s quality of life. This led to the launch in 2012 of the 501C3 nonprofit organization Hope 4 Mobility which seeks to give the financial means to buy these aids.
Since the organization’s launch, it has helped between 15 and 20 families. Donations have been given to Hope 4 Mobility such as Quantum Foundation which recently gave $10,000 which is enabling the foundation to help even more families. Indeed, as Jones said, the amount of funds received is directly related to how many people can be helped. Electric wheelchairs can cost up to $10,000 a piece.
The Willis family has certainly been through enough to fill a lifetime. After miscarrying in 2002, Jeff and Lynel were told that they would not be able to conceive again without medical intervention. Becoming pregnant quickly thereafter, however, they were filled with hope. But the doctors kept telling them that things did not look good with the fetus. As Lynel explained,
“They told us there was no hope and we should terminate the pregnancy but we weren’t even supposed to get pregnant in the first place. We had hope and we said, ‘This is what God gave us and we will be faithful to it.’”
Haley Faith Willis came into their lives on July 9, 2003. Having lost a third of her brain, the baby wasn’t supposed to live for more than two weeks. Haley just celebrated her 10th birthday and she is in fourth grade. She has sisters Brynna Grace (5) and Roslyn Joy (4) as well.
She also has cerebral palsy, hydrocephalus, microcephalic, vision impairment and is developmentally delayed and has had about 11 surgeries and multiple long-term therapies. But the family sees her as a miracle child. As Lynel explained, “On paper, she looks terrible and doctors don’t understand why she is functioning the way she does. When we moved to Illinois and saw her doctor in St. Louis for the first time, he looked at the file, then looked at her. He said, ‘This is Haley Willis? This child is not what my textbooks say I should be looking at.’ He was in shock about her.”
Jeff, a West Frankfort native and pastor of worship and technology at Harvest Church of Southern Illinois in Anna, explains that “No matter what life throws at you, there is a plan and a purpose to it.”
As Lynel explained, “We had no idea we would be given a child like Haley but she’s been the greatest gift we’ve ever been given. She’s taught us not to take life for granted, to try and laugh and be joyful.”
Eight-year-old Joseph Hill is making wonderful progress after surgery took him out of his wheelchair and onto his feet. Joseph was born with cerebral palsy, and was going to have a special operation paid for by the National Health Service until the rules changed and the family discovered they would need to pay for the operation out of their own pockets.
The community of Yorkshire rallied behind Joseph and raised the £40,000 needed for the surgery after the Yorkshire Evening Post published the plight of Joseph Hill in July. Joseph had the procedure done at Leeds General Infirmary, and is now making a fabulous recovery.
Hill’s mother, Angela said, “It’s just a wish come true. It’s such a different future for him now. Mobility hopefully won’t be an issue. There’s still a long way to go but there’s a light at the end of the tunnel where there was not before.”
Joseph will have physiotherapy for at least the next two years and is expected to continue making great progress.
“Every day there’s an improvement. It’s been amazing,” said Angela. “He has gone from walking on a walking frame to tripod sticks. He’s also managed to take a few independent steps by himself. We cannot wait for the next year to come.”
Angela added that, “We could not have done it without everybody’s help.”
Joseph had a procedure called a selective dorsal rhizotomy which is expected to be able to allow Joseph to one day walk unaided. Because the surgery needed to be done before Joseph’s ninth birthday, which is next month, the community quickly organized to raise the needed funds as soon as it was discovered that the NHS no longer paid for it.