EASTER SEALS NEWSVOLUME 22, Fall 2020

Stella was sleepier than other babies and had a difficult time moving. Without a formal diagnosis, though, Stephanie and Sam were left in the dark – not knowing what was affecting their daughter’s development or how they could help. “I felt like I did something wrong, and I went through a really hard time,” Stephanie shared.

Stella’s family spent three long, stressful years hoping and searching for answers. Finally, in March of 2019, Stella was diagnosed with PURA Syndrome; an extremely rare genetic disorder discovered in 2014, just two years before Stella was born.

PURA Syndrome can have a wide range of symptoms. For Stella, the condition has caused severe hypotonia, which is a state of low muscle tone. This means that Stella must work extra hard to get her muscles moving and seemingly small tasks, like eating or standing up, can take an enormous amount of energy.

Prior to the pandemic, Stella attended physical therapy multiple times a week. She is working on developing her strength and balance, but she still requires equipment to move on her own. Unfortunately, not having access to

physical therapy over the last few months has caused a regression in Stella’s development – making her need for mobility and accessibility equipment even more urgent.

Earlier this year, Easter Seals Ontario helped Stella’s family purchase a car seat so she can enjoy the freedom of travelling safely with her family. “Financially [the support from Easter Seals] has been great,” Stephanie says. “Equipment for kids with special needs is extremely expensive.”

Unfortunately, COVID-19 has only introduced even more barriers for Stella, and children like her, in accessing the essential equipment they need. Without equipment, “she doesn’t have freedom,” Stephanie explains, and “equipment is essential because [kids with disabilities] need their freedom.” It is only through the generosity of donors that we can continue to break down barriers and provide freedom to children like Stella. Thank you for your support.

Giving Children AND Families Quality of LifeFor most of us, the arrival of the warm weather after a long, cool spring in lock-down was a welcome change. However, for Easter Seals mom, Melissa, getting outside to enjoy the summer became an added source of anxiety.

Melissa’s twelve-year-old son, Sean’John, has cerebral palsy quadriplegia and is non-verbal and completely dependent on others for his care. As a result, he is more vulnerable to catching the COVID-19 virus. “It’s really hard to find safe ways to do things outside now, and I get anxious about trying to go out because of Sean’John’s condition,” says Melissa.

The pandemic has brought on a host of additional challenges for families with children with physical disabilities. For example, discontinued support by personal care workers and therapy sessions has required parents to provide 24/7 care while also trying to work and care for the rest of their family. With no respite options, many parents are suffering from exhaustion and stress.

“The physical aspect of caring for a fully dependent child 24/7 is difficult and tiring,” Melissa comments.

“There is always something to be done.”

Thanks to our donors, Easter Seals has been able to assist Melissa with funding to help get her son a porch lift, wheelchair and bath seat. “Sean’John relies on his wheelchair and is quite spastic. The new chair is much softer and has helped to make him

more comfortable and relaxed,” says Melissa. “At 55 lbs. lifting Sean’John was difficult and hard on my back. The porch lift has allowed us to take him outside again, even if it’s just to sit. And, the bath seat makes it much easier to get him in and out of the tub, which he finds very soothing on his stiff muscles.”

“Having the right equipment is really important. Without this support, it would be so much harder for us to provide him with this quality of life,” adds Melissa. “Now even his little brother is able to help and play with him. We are very grateful that there are others who are willing to help us have the ability to do more with our lives.”

You can help change the future for kids with physical disabilities by leaving a gift to Easter Seals Ontario in your Will.Making a gift in your Will to Easter Seals Ontario (Charitable registration #119068377 RR0001) leaves a kind and loving legacy that will make an immense difference for children with physical disabilities by giving them the opportunity to live with greater dignity and independence for years to come.

For more information, please contact Kayley Trumbley at Tel: 416.421.8778 ext. 361 • Toll-free: 1.800.668.6252 ext. 361 • ktrumbley@easterseals.org

Equipment is Essential for Kids’ FreedomStephanie and Sam noticed early on that their daughter Stella wasn’t reaching her expected milestones. However, when the concerned parents sought medical advice, no one could tell them what was wrong.

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

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

Support Makes Life at Home Safe for Resilient Boy Suzanne’s face lights up as she describes her son, Jules, who will be just old enough to begin junior kindergarten in the fall.

Jules was born with SEPT 11, a genetic condition so rare that only one other person in the world shares his diagnosis. As a result of his condition, Jules lives with visual impairment, hearing loss and very low muscle tone.

Prior to the pandemic, Jules visited a therapist weekly for speech, physical and occupational therapy. Through hard work, Jules gained the ability to sit up on his own and he has improved his balance and visual tracking. However, Jules still requires several pieces of costly accessibility and mobility equipment to get him safely through his day.

“Having a child with special needs can be very expensive” explains Suzanne. “Equipment can be very expensive and not knowing how you’re going to get it for your child can be very overwhelming.”

Even to simply take a bath, Jules requires equipment to keep him safe. Thankfully, Easter Seals was able to help Jules’s family purchase a bath chair, which can cost up to $5,000. “It’s got little straps to hold him at the waist, head support, leg supports and straps,” Suzanne says, describing the chair. With regular services and care providers

unavailable due to COVID-19, children with physical disabilities are relying on this type of at-home equipment to get by. If their equipment breaks or they don’t have access to it, a child like Jules loses the ability to complete essential daily tasks.

Ensuring that children and youth with physical disabilities can live safely and with dignity in their own homes is our priority. It is a vision only made possible through the generosity of our donors. “It’s nice to know there’s something like Easter Seals to help out families who can use the support,” Suzanne shares. Thank you to all Easter Seals donors; your unwavering support allows a child like Jules to keep shining, even through these challenging times.

Student on the Path to Pursue His PassionMy name is Logan, and I just graduated from high school. I am twenty years old, and I have both autism and cerebral palsy. I understand what it is like to live with disabilities. I also know what it means to have the support of your community and a wonderful organization like Easter Seals.

Throughout my life, I have struggled but I have also been blessed. It takes a village as they say, and I have had incredible educators, coaches, doctors, therapists and a nurturing family who have all supported my journey to this point. But, attending university would not be possible without Easter Seals and the generosity of their extraordinary donors.

In September, I will be participating in the university experience, something I have worked extremely hard towards for seven years. I am enrolled in the Social Sciences program and my focus will be on history. I would very much like to be a historian and published author. I would like to be a teacher and perhaps even a professor someday.

University is expensive and families of disabled youth incur a lot of financial expense over a lifetime. This scholarship will go a long way towards making my future goals and aspirations become a reality. Without the help of gracious donors, it would not be possible for many young people such as myself to dare to dream, so I thank you for your kindness and for believing in me. I will do you proud.

Humbly yours,Logan

You can help kids like Logan pursue their passion by donating to an Easter Seals scholarship. For example, for $500 we can create a scholarship in your name.

For more information about creating a scholarship or contributing a smaller amount, please contact Alison Morse at amorse@easterseals.org or call 416-510-5070.

Anonymous (7)Muriel & Doug AckhurstPhil & Diane ArnoldKaren & Bill BarnettSusan BarrettTerry & Colleen BaskinMargaret BatesArdythe BestBruce BlackMilton & Mary BlackWilliam BryantDonna ChantlerMichael ChaoRina ClarkKevin & Maria CollinsCarol A. CookMr. & Mrs. Charles CoupalBev & Jane DekayJune DewarBruce D. DoddsNancy ErwinJacqueline FinnJames FlaniganCasey GallagherThomas GoldsteinRay HanlonKaryn HarrisonT. HarrisonJohn HayesGlynis HenryJ.R. HiraJames HogarthLynn HollingsworthBarbara & Bill HoweAl IngletonWilliam JardineChristy & Kevin KellyCorinne Lukoff BownessJudy MacDonaldTroy & Janine MaxwellNancy & John McFadyenRorie McIntoshJanice McKayDale MooreGlen MorawetzKimberlee MorganMichael MorrisonGreg & Joan MumfordKhorshed PatelChris PhilionMarni & Rick PrzybylskiBarbara RitchieDarlene RyanTerry SauriolSally ShortJames St. JohnCatherine SteeleEdith SwanMr. & Mrs. Walter SweetmanYolande Tsampalieros

We extend our heartfelt gratitude to all donors who have generously supported Easter Seals Ontario so far this year. Recognizing President’s Circle donors who have made a gift of $1,000 or more to June 30, 2020.

Peterborough September 13 YourTV and Global Peterborough 10 a.m. – 5 p.m.

Sudbury September Eastlink TV

Toronto Date/Time TBD CBC

Windsor Date/Time TBD CTV Windsor and AM800 CKLW

COVID-19 has put our fundraising events on hold, but you can still lend your support and make an impact for kids and families who need us more than ever. Tune in to the Easter Seals Telethon in your community this fall.

Please check EasterSeals.org for updated information as it becomes available.

“He’s always happy and he’s always smiling …

He’s absolutely a little sweetheart.”

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