Standing in a hospital, Sonya and Scott waited for the MRI results of their three-month-old baby, Dylan. “We did not have any concerns at Dylan’s birth,” said Sonya. But a few weeks later when Dylan had difficulties feeding, his doctor found a more threatening worry.

“His doctor measured his head circumference and noticed a sudden increase in size. He said Dylan had hydrocephalus (a condition causing swelling in the brain).” Immediately, “we were shipped off for an MRI of his head to determine the cause,” said Sonya. “The results of [that] MRI would change our lives forever.”

That same day, Dylan was diagnosed with Vein of Galen Malformation, a rare congenital deformity affecting a large vein that forms deep within the base of the brain. Or as Sonya puts it, “A huge pouch of blood formed in Dylan’s head, taking up at least a third of the space in his skull.”

As a result, Dylan received seven embolizations – extremely risky interventions done to block off the tiny blood vessels and slow down the blood flow. “The doctor told us that night, Dylan would be fortunate to see his first birthday. They told us Dylan would never walk, talk or sit unassisted. At best, he may learn to use a communication device,” said Scott.

However, Dylan defied the odds. Now at age seven, Dylan relies on his wheelchair to get around. Inside his home, which had to be renovated to make it wheelchair accessible, he uses a “Special Tomato” chair on wheels, a ceiling lift and ankle-foot orthotics to stabilize and maintain his range of motion. “Dylan even reacts to and laughs at lots of different sounds and funny noises. At school, Dylan is learning how to use a single message device!” said Sonya.

It wasn’t until Dylan fought through his ordeal that it began to sink in that life would be dramatically different for Sonya, Scott and their family.

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For more information, please contact Jennifer Babbs at 416-421-8377 ext. 309, toll-free at 1.800.668.6252 ext. 309, or email jbabbs@easterseals.org.

EASTER SEALS NEWSVOLUME 20, Fall 2019

Against the Odds

You can help change the future for kids with physical disabilities.

Making a gift in your Will to Easter Seals Ontario leaves a kind and loving legacy that will help kids with physical disabilities receive funding for mobility and accessibility equipment, as well as opportunities to enjoy summer camp for years to come.

Three Cheers for Volunteers!For the past five years, tournament committee members Scott Dietrich, Mark Fackoury, Jason John and Mike Galan have worked tirelessly on team recruitment and sponsorship for the Kitchener-Waterloo Celebrity Hockey Classic. Raising more than $90,000 with just eight teams in their first year of the Hockey Classic, the Committee has taken this tournament to the next level, generating more than $270,000 in their fifth year with 18 teams on the roster. With their outgoing personalities, enthusiasm and professionalism, they have developed new corporate relationships, introduced new key players, and this summer they also organized a very successful golf tournament to benefit Easter Seals kids.

Scott, Mark, Jason, and Mike, you are phenomenal – thank you for your dedication and unwavering support!

Student Achieves Excellence Through PerseveranceSydney is about to leave the nest soon to take her next steps in college. How is she able to confidently embrace the uncertainties in her future? Her story began when she was only 10 months old and diagnosed with cerebral palsy. From a very young age, Sydney required assistance with daily tasks that we take for granted, such as getting dressed, eating, and transporting. Her family underwent multiple changes in their lives to provide her with the right care and essential mobility and accessibility equipment, including an accessible van, a power wheelchair, a ramp, walker and bath seats.

While some may have believed her disability would prevent her from succeeding, she never doubted her capability. Her perseverance enables her to excel at school both academically and in extracurricular activities. She partakes in a diverse set of activities such as therapeutic horseback riding and music camp while also being a spokesperson for multiple organizations including Easter Seals Ontario. She also actively participates in her school board’s accessibility committee and various subcommittees to promote accessibility awareness and prompt educators to take into consideration the importance of accessibility.

The path to achieving her accomplishments was not easy. Earlier this year, Sydney’s achievements were recognized when she received the Sal Iacono Family Bursary Endowment Fund towards her study of Social Work at Algonquin College this fall. She aims to pursue a career in child and youth services to help guide children to their goals, similar to how Easter Seals has supported her.

“I would like to take the opportunity to thank the Sal Iacono family and Easter Seals for the bursary I received. This bursary will help me as I continue my education at Algonquin College in the Social Work Program. I am very thankful for this opportunity and the generosity of the Iacono family,” said Sydney.

2019 Easter Seals Scholarship RecipientsJohn Domenic Caggiula Memorial Scholarship • Lorna Louise Dean

Easter Seals Ontario Board of Directors Scholarship • Leon Li

Hira Scholarship Fund • Logan Wong

Sal Iacono Family Bursary Endowment Fund • Sydney Gillam

Kevin and Christy Kelly Scholarship • Muhammad Umar Siddiqui

Truelove Dell Scholarship Fund • Jessica Ursitti

“Imagine you’re going to a sports event where your favourite team is playing a home game or just think about going to your favourite restaurant. Those places usually have some sort of step or a few stairs, that might be a molehill for you, but for me, those steps are mountains,” writes 14-year-old Zoe, a fearless, vivacious, French Immersion student with a generous heart.

Diagnosed with spastic diplegia cerebral palsy when she was just three days old, Zoe uses a walker and both an electric and manual wheelchair as she “can’t move around that well on [her] own two legs.” Still, that doesn’t stop Zoe.

Disability doesn’t define who she is, what she wants to do, or what she will achieve.

“Businesses, airports, train stations and even theme parks aren’t completely accessible to me. When my family and I go on outings, and the people at restaurants and even hotels tell my dad to ‘Carry your daughter up the steps,’ I just want to scream. My dad can’t always carry me up every single flight of stairs!” Zoe continues. “Think about the people who struggle to do everyday things, but there isn’t a ramp to help them. Think about people with disabilities like mine as brave, beautiful people that can accomplish anything.”

Easter Seals has been a source of assurance for Zoe and her family to enable her to accomplish whatever she sets

her mind to, especially with the equipment Easter Seals has funded like her van lift, a car seat and stair lift, which Zoe says “help me live a life like everyone else.”

It was a life-changing moment for Zoe’s mom, Mina, when after every single doctor told her Zoe only had a five per cent chance of walking, she learned about Easter Seals. “Our precious Angel was going to struggle all her life by not enjoying all the things a normal child would,” said Mina. “It is a relief and a blessing knowing we have support to help us fulfill Zoe’s needs and her activities. It is a blessing knowing the donors care.”

Ignore the Wheelchair and See Zoe, the Person

Adam is a very bright young man; he loves math and geography and is in the Gifted Program at his local school. When he grows up, Adam wants to be an engineer. He also has quadriplegic bilateral cerebral palsy, which means he is entirely dependent on mobility and accessibility equipment to be active and participate in day-to-day activities.

When Adam’s mother, Joan, first heard about Easter Seals camp, she knew she wanted Adam to try it. However, she was concerned about leaving her dependent son in the care of others. Then she learned about Easter Seals Family Camp. “Family Camp was phenomenal – it ranks up there as one of our most favourite family vacations,” says Joan. “Not only could we participate in activities with Adam, we also got to experience the world on his level.”

Family Camp also allowed them to see firsthand the type of care Easter Seals campers receive. “Sending a child with such incredible needs into the care of others takes a big leap of faith. After being there with

Adam and seeing how caring the staff are,I was confident he would be in good hands,” adds Joan.

Adam has now been to Individual Camp three times and looks forward to it all year. He loves the high ropes course, cooking class, and most importantly, socializing and meeting new people. He’s hoping to one day make the “Camp Woodeden 10-Year Wall of Fame!”

“After attending Individual Camp, we saw a marked change in Adam’s confidence and so did his teachers,” continues Joan. “The kids at Adam’s school are really great with him, but being in a wheelchair poses a lot of barriers to participation. I feel his time at Easter Seals camp has given him the confidence to become much more engaged in speaking up and advocating for himself.

Our family and especially Adam have been so blessed by the giving of Easter Seals’ donors. Their generosity improves his life every single day. We can’t thank you enough for the help you have given our family and so many other families who need help and support.”

Camp Gives Kids and Parents Confi dence

EasterSeals.org@EasterSealsON EasterSealsOnt

Anonymous (5)Lucio AngelucciPhil & Diane ArnoldKaren & Bill BarnettSusan Marie BarrettPhil BartuccioAlexander BeatonPaul & Kaye BeestonBruce BlackMilton & Mary BlackSteve BlanchetChris BourdonCatherine & Rudolph BrattyWilliam BryantMr. Kevin BryentonC.E. Bulloch

E. CastonguayCathy CiccoliniSam CiccoliniPaolo CiotolaRobert ClarkRichard ColeChris CollinsKevin & Maria CollinsRoger DeGuireJane & Bev DekayEric DemirianPatrick DillonMatt DixonBruce D. DoddsMichael DunnTrevor Evans

Agnes FaraciJames FlaniganScott ForrestallJane FrancisMike GalanCasey GallagherStew GarnerJohn GibbonsMichael GriffithsMaura HarringtonMark HealyGlynis HenryCheryl HicksJ.R. HiraBeck HofflandChristina Holmes

Jerry HowarthThe Jackson FamilyDr. Glen JacksonWilliam JardineMark JeppJeffrey KerbelRobin LamarreTamara LeeHenia LifshitzJudy MacDonaldShona MacLeanMichael MacriTony MaioJ. R. & Jane McGeeColin & Judy McIntoshRoss McIntosh

Gary & Joyce McMurrayAttilio MelattiMichael MelnikKirt MillwoodDale MooreScott MooreKhorshed PatelEd PearceGerard PerdueChris PhilionMario PietrolungoNadia PilonShireen PrekstaChelsea PurcellStephen & Brenda RadfordMargaret Riach

E. R. RossMike ScottJoyce ShermanSally ShortDarryl SpectorGreg ThedeCecile VolfKeely WhetungBrent WilsonCarl WilsonDarren WolframeJulie WoolseyAlex & Charlene ZivojinovichMike ZuccatoDario Zulich

THANK YOU TO ALL OUR DONORS FOR YOUR KINDNESS AND GENEROSITYWe sincerely thank all our donors for their generous support of children and youth with physical disabilities. Recognizing donors who have made a donation of $1,000 or more up until June 30, 2019.

We sincerely regret any inadvertent errors or omissions. If you have any questions about the President’s Circle, please contact Kevin Collins at 1.800.668.6252 ext. 340 or kcollins@easterseals.org.

CONTACT US: EASTER SEALS ONTARIOOne Concorde Gate, Suite 700Toronto, ON M3C 3N6

Tel: 416.421.8377Toll-free: 1.800.668.6252Email: info@easterseals.org

Celebrity Hockey Classic Players and Sponsors Visit Camp Woodeden

Former NHL stars and celebrity hockey classic supporters hung up their skates to join us for our Celebrity Hockey Classic Camp Day to see firsthand how their support makes a difference.

Want to lace ‘em up alongside hockey’s finest? Get a team together and play in the Celebrity Hockey Classics at:

Brampton May 15 & 16 – Completed Toronto, Etobicoke October 17 & 18 Thunder Bay October 24 & 25 York-Simcoe, Vaughan November 7 & 8 Eric Lindros, Whitby November 14 & 15 Rick Vaive, Waterloo November 21 & 22 Grey Bruce, Port Elgin November 28 & 29 Brad May, Oakville December 5 & 6

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“We struggled emotionally, grieving all of the things that Dylan will never be able to do, things he’ll miss out on in life. It’s not always easy to find fun family outings that Dylan can do along with us,” Sonya said. Dylan has an older sister, Marika and younger sister, Jenna. So, “when Dylan is in hospital, it’s a struggle for our family, being apart, one parent there, one parent at home, switching back and forth, as we juggle back and forth between our kids, spending weekends with all of us at the hospital sometimes.”

That is when Sonya turned to Easter Seals for not only financial, but emotional support. “It is a relief for us, financially, knowing we have support for items we simply cannot afford on our own but that Dylan requiresto continue to make progress and for quality of life. We are humbled by all the donors out there who help make a difference in the lives of our children as they grow up,” said Sonya.

For more information, visit CelebrityHockeyClassics.com.