Bolton woman driven to succeed, needs help with computer equipment

Written By MARK PAVILONS

Don't tell Amanda Burley she can't do something.

The 22-year-old Bolton woman is a fighter, and she's driven, partly by her own passion and partly due to the challenges she's faced throughout her life.

Amanda was born with FASD (Fetal Alcohol Spectrum Disorder), but she doesn't let that hold her back. She's pushing ahead and pursuing her dream of working in the medical field.

She is currently enrolled in the personal support worker program at the Humber College north campus. Because of Amanda's special needs, her brain learns differently than others and she is in desperate need of a computer loaded with specialized programs that will  help her understand and retain information in order to succeed. 

The Accessible Learning Services at Humber has advised that Amanda needs this computer and related software, that includes Dragon Naturally Speaking, Professional V 15, with a Logitech USB headset.

And she needs it soon, as classes begin next week.

Amanda is not one who enjoys asking for help or financial aid, but in this case, it's imperative if she's to succeed.

“I want to be in the medical field and I won't stop (pursuing my dream),” she said.

She lives with her primary caregiver and aunt Donna, who's all too familiar with the unique challenges.

Meeting Amanda and hearing her speak, the average person wouldn't even clue in that she has a disability. Her verbal and social skills are excellent.

But Donna points out Amanda often speaks her mind. She has to reign it in a bit and everything will have to be structured for her moving forward. Amanda also has difficulty reading, writing and with mathematics. But given the right conditions and supervision, Amanda can excel. People just need to see her potential and harness it, Donna noted.

Amanda needs to be taught in a certain way and anxiety and stress all take their toll on her if she's overtaxed.

“No one wants her to succeed more than I do,” Donna said. There's no question her niece is tenacious and has a lot of heart.

That's where the computer and software come into it.

To that end, long-time resident Winifred Mellor-Hay launched a GoFundMe page to raise the needed funds. They are asking family members, friends, acquaintances, bowlers, jammers, roller coaster aficionados to help Amanda get her laptop, and help her get through her courses at Humber.

They're looking to raise roughly $2,500 for the needed equipment but time is of the essence. If you can help, visit gofundme.com and search ‘Imperative Tool for Amanda's School'. As of press time, $1,060 of the $2,500 goal has been raised. 

Mellor-Hay said she met Amanda at the Bolton music jam.

“In her I saw a fierce spirit burning bright,” she said.

Mellor-Hay admitted she didn't know much about GoFundMe but figured if just 100 people donated $25, they'd have their money.

“I thought Amanda's cause was noble. Everything she does, Amanda breaks barriers. She is living with a disability but she doesn't let it stop her from doing anything she wants to do. She is committed, determined and never gives up. If she doesn't get this laptop she will have to quit school.”

Amanda is a passionate advocate for spreading awareness about FASD. She's so adamant in fact, that she would like to see laws in the future prohibiting pregnant women from drinking any alcohol. She would take that a step further, and lobby decision-makers to implement punitive damages to moms who give birth to severely disabled children with FASD.

FASD is a brain injury that can occur when an unborn baby is exposed to alcohol.  FASD is a lifelong disability. Individuals with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation, and social skills to reach their full potential.

FASD is the leading known cause of preventable developmental disability in Canada. The number of people who have FASD is not known in Canada, nor anywhere else in the world. This is because FASD is difficult to diagnose and also because it often goes undetected.

Current studies suggest that up to 4 percent of individuals in Canada have FASD and there are 1,451,600 people with FASD in Canada today.

Amanda is a hands-on learner and she excels at any task when she rolls up her sleeves and gets to work.

She's also quite giving and compassionate, putting others before herself. 

“I wear my heart on my sleeve; that's how I am,” she admitted.

For several years, Amanda has been reaching out through her “FASD Forever Amanda” YouTube channel. Getting a hand from her coach and advocate Jeff Noble, Amanda has been able to reach a large audience. 

Noble and Tara Soucier-Noble have been working with Amanda for years. Through FASD Forever, the team offers a Caregiver Kick Start, a live, online training course that involves an exclusive community where the focus is FASD and the goals are to learn, share and support one another while supporting someone with FASD.

Noble also teaches front line staff, educators and caregivers about the ins and outs of living and supporting someone with FASD. 

Amanda is fully aware of the challenges that await, but that doesn't deter her. Ideally, she'd love to become a nurse, the first-ever with FASD. She enjoys working with children and the elderly.

Seeing the smiles on kids' faces would be her “ideal pay cheque.”

She wants to prove to others, and herself, that “a kid with a disability can do it.”

For someone who loves singing “Brown Eyed Girl” at Stratengers on Thursday nights, anything is possible.