From “T. rex” to teen titan: the story of the “Easter Seals Girl”

Sanjay Maru
By Sanjay Maru April 17, 2018 00:13

From “T. rex” to teen titan: the story of the “Easter Seals Girl”

Growing up, life was not kind to Morgan Bennett-Murphy.

The kids in grade school called her a T. rex. She traveled to Toronto every few months for reconstructive surgery. And she couldn’t even ride a bike.

Morgan is a member of Easter Seals Ontario, a non-profit organization which provides programs, services and financial assistance for children with disabilities. During multiple reconstructive surgeries, Easter Seals Ontario assisted Morgan’s family with covering medical expenses, such as costs for wheelchairs and travelling to and from surgery.

Morgan was born with only three fingers on each hand.

Within the first seven months of her life, she was undergoing reconstructive surgery so that she could hold objects with two fingers missing.

A few years later, doctors made another disturbing discovery.

She had scoliosis – a condition in which a person’s spine has a sideways curve. Doctors are still unclear what caused her condition.

Heather Murphy gave birth to her daughter, Morgan, at the age of 17. Photo courtesy of Heather Murphy.

Morgan is now 19. Her mother, Heather, gave birth to her when she was only 17.

“I was young … so the challenges of being a mother of a child with special needs was very difficult,” says Heather.

Upon her birth, Morgan’s biological father quickly ran out of her life. She can only speculate as to why he has been so absent.

“I guess he was scared. He must’ve felt that it would be better for me if he wasn’t around. He was really young too at the time,” says Morgan.

For the next eight years of her life, Morgan required the use of a back brace nearly 22 hours a day.

Unfortunately, the brace failed to prevent her spine from curving and Morgan would require more reconstructive surgery – this time, for her back.

“I started having my spinal surgeries where they put titanium rods in my back and then they kinda’ fused them to my spine,” says Morgan.

Around this time, Heather introduced her daughter to Easter Seals Ontario. In Morgan’s inaugural year, she was assigned as an ambassador.

“I was the face of Easter Seals and I would do interviews and go on the news or the radio and then be on the telethon and just promote Easter Seals more and get people involved and try to have people make pledges and donate,” says Morgan.

Her inability to perform the same tasks as other kids, along with her differences in her physical appearance, forced her to take on another challenge.

“Growing up, I dealt with a lot of bullying in school. So I got called a bunch of different names like T. rex or alien,” says Morgan.

Though Morgan faced constant bullying, Heather never stopped staying by her daughter’s side.

Morgan underwent a series of highly-invasive spinal surgeries throughout her childhood.  Photo courtesy of Morgan Bennett-Murphy.

“We had lots of talks and discussions on how we were gonna handle it. And we decided that the best way to handle it (is to say), ‘You have a question? This is what I look like. This is what I am. I can do everything you can do. Just a little different,’” says Heather.

Morgan decided, at the age of 12, she would start to prove those words to be true.

“As soon as I was allowed to go out and do stuff, my grandparents took me to Canada’s Wonderland and I got to go on roller coasters for the first time,” says Morgan.

Around this same time, Morgan was introduced to a new individual in her life courtesy of her mother, Heather.

Her stepfather: Steven.

He says he was instantly taken aback by her drive and will to always keep moving forward in life.

“My favorite quality about her is that she never gives up. She’s been like that her whole life,” says Steven.

“My stepdad entered my life when I was … just finishing up all my surgeries. And he proposed to my mom a year later. And me and him are super, super close. So the father-daughter relationship that I missed out on with my biological dad, I found it with him, so I don’t think of him as my stepdad. He is my dad,” says Morgan.

Two years later, Morgan’s mother and stepfather had her try out another activity that she could never do when she was younger.

“There was this program that we found and it’s for kids with disabilities who don’t know how to ride a bike, so they had all these volunteers there and they helped us learn how. So I learned how to ride a bike at 14,” says Morgan.

The Easter Seals program also helped Morgan’s family tackle the high costs of medical expenses.

“I had all my surgeries (in Toronto). So we would have to pay for a hotel and gas money which got really expensive – especially going up every couple of months. So Easter Seals helped us afford that. So with the money that the raised from telethons, they’d give it to my mom so we could afford a hotel and, like, food and everything,” says Morgan.

With the help of the Easter Seals, Morgan was able to overcome the pain of highly invasive surgeries.

“They made me walk after surgery, like, the day of. So, within a couple of hours after waking up, I had to get up and I had to be moving around. So they would have me, like, walk up and down the hallway. And then I could relax. And then a few hours later, I’d have to get up again. And it was, it was a lot. But by the fourth surgery, I started getting really good at it. And I started dancing by the second day and just moving around. Or I was skipping down the hallway on the fourth day,” Morgan explains.

Her new lease on life, along with a change in academic scenery, gave Morgan the confidence that she had lost when she was bullied.

“Once I got into high school, people stopped caring about differences. I don’t know. People in high school – they’re more accepting. So they kinda’ got to know me as a person. And half of my friends at first – they didn’t even realize that I had a disability until I mentioned it to them,” says Morgan.

Morgan attended St. Anne’s Secondary School from 2012 to 2016. Unsurprisingly, Morgan used her high school experience to advocate for the visions and values of Easter Seals Ontario.

“I didn’t know that I was known as the Easter Seals girl until after I graduated. I went to some carnival and people came up to me and were like, “Oh, you’re Morgan, right?”

Morgan Bennett-Murphy proudly stands in front of the set of the 2018 Windsor-Essex Easter Seals telethon. Photo by Sanjay Maru.

Morgan had thought she was invisible in high school, but was shocked to learn that she was highly recognized.

“Apparently everybody knew who I was,” says Morgan.

Having just finished her second year of the Child and Youth Work program at St. Clair College, she wants to try her hand in Public Relations – a program she feels well prepared for.

“For this program, I’ll get to promote other organizations. And since I’ve been doing that with Easter Seals, I feel like I could do a really good job at it and I already have my foot in the door. So I thought, ‘Might as well continue and get education about it,’” says Morgan.

Morgan now uses her experience to inspire others to overcome similar obstacles.

“One lady would mention that she was going in for surgery. So Morgan decided to tell her how it was going to be and she’s like, ‘they’re going to give you a needle this long!’ … This poor lady was terrified about going into surgery, but then she looked at Morgan and (said), ‘if this young lady can do it, I can do it,’” says Heather.

Her strength and resiliency has made her one of the staples of the organization.

“We’ve always been told she’s here for a reason. We don’t know what that reason is but she’s here to make a difference and prove something. And she’s, so far, done an awesome job, but she’s not done. She’s going to be an inspiration to a lot of people,” says Heather.

Keeping things in perspective

While Easter Seals Ontario has helped countless families support families of children with disabilities, the financial assistance that Morgan has received is rare. Millions of other families who do not receive such support.

Tina Kennedy has a seven-year-old son with autism.

“I think that the system is broken,” says Tina.

Morgan’s mother, Heather, and Tina were going through chaotic situations when their respective children were four years old.

For Heather, she was being told that her daughter had scoliosis. For Tina, doctors had informed her that her son was autistic.

“Parents don’t understand that they need to get their child assessed at a younger age. (My son) didn’t get diagnosed until he was about four. And by that time, I couldn’t access any type of government service because he had aged out.… Once your child goes into the school system, then it’s the school’s responsibility to give you support for your child. So now you’re in a catch-22. You can’t access any kind of service and you have to wait for the school,” says Tina.

She says that government assistance is too low and a lack of support programs have forced her to lose time with her son.

“(The government) gives the money to the parents and then the parents talk to the accountant to then spread that funding to service areas – wherever it needs to go. But I want to be his mom. I don’t want to be his accountant. That’s another stresser.”

Kennedy believes that there are many costs to raising a child with a disability that most people do not consider.

“We have to keep all of the receipts. Every time we have to bring him somewhere, we have to tally all of the kilometers. I feel like once you’re diagnosed with something, then you should just get the service. …‘Oh, you have a diagnosis? Well now you have access to this service.’ That’s how it should be,” says Tina.

Morgan’s mother, Heather, says that she is very lucky for Easter Seals Ontario to have been a part of her life.

“They helped us out a lot,” she says.

Sanjay Maru
By Sanjay Maru April 17, 2018 00:13

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