NAHS freshman is thriving while living with lupus

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This story is different. Most My Story articles are told by the person who is living courageously with a health issue, but we are lucky. My husband, Scott Linek, and I get to share our daughter’s story with you because it’s a story that is most appropriately told in this fashion.

You see, Emily can no longer use her hands to write. Nor, for that matter, can she walk, talk or even dress herself without assistance.

But this is far from a sad story. Rather, it’s a call to action to meet daily challenges – challenges we all have – with an unbeatable attitude, and a will to live fully. Emily isn’t limited by her physical boundaries. Instead, she is constantly refining and crafting her strengths and overcoming obstacles every day.

If you’re interested in learning more about Emily and others with special needs, I recommend reading Out of My Mind by Sharon Draper.

Before sharing where she is today, you must understand the start to Emily’s journey. She was born a completely healthy baby, and walked and talked like all toddlers do. But by the age of 2, Emily’s speech slowed, her walking was shaky at best and sitting without support was nearly impossible. By age 3, she could no longer hold a crayon or feed herself, and she used a wheelchair to get around. Doctors and specialists throughout the country were baffled; every biopsy, blood test and medical procedure revealed nothing. There was no diagnosis, and we were in the dark – a very frightening place to be.

God shines brightest in the darkest moments, and finally, when Emily was 5, a random blood test revealed that Emily had an autoimmune disease – lupus – that was slowly attacking and destroying a part of her brain that controls motor function. She immediately began aggressive chemotherapy to stop her immune system from attacking her own body.

As a family, it comes natural to assimilate Emily’s challenges into our physically active lives, as Emily wants to participate in everything. Resiliency and commitment to inclusion is the driving force of Emily’s life.

So, what does a typical kid in an atypical young body do? Everything.

Emily runs, swims and even hikes with her sisters, Abbie, 17, and Kaley, 11. Emily has even taken years of adaptive horseback riding lessons. We just adapt and figure it out.

Her latest passion is swimming. Through the amazing collaboration of New Albany’s adaptive physical education teacher, Barry Ward, and the Philip Heit Center for Healthy New Albany’s director, John Paro, Emily heads to the pool twice a week after school. Driven by her passion and the Linek family motto (“Success comes from hard work”), Emily has excelled in the pool. She recently took 50 steps in the Heit Center pool. Fifty assisted steps may seem like a small thing, but to a young girl in a wheelchair, those 50 steps are truly freeing.

With the help of an adaptive communication computer, Emily has found her voice. And, being very vocal about her opinions, she’s not afraid to use it. Emily communicates using the retinas of her eyes to signal a voice output from her computer. She works tirelessly with the progressive special education staff at New Albany-Plain Local Schools. Emily participates in class, talks out of turn, plays games instead of doing homework and even tells her sisters when they are bugging her – just as all 15-year-olds do.

Emily teaches us that she is so much more than a “special kid in a wheelchair.” The depths of her perseverance and grit is truly what makes her special; the wheelchair does not. And each time we think we’ve met our capacity for a challenge, Emily shows us that our capacity is limitless.

Molly and Scott Linek and their daughters, Emily, Abbie and Kaley, are New Albany residents. Molly is a registered dietitian and fitness instructor at the Philip Heit Center for Healthy New Albany and Emily, who lives with lupus, is a freshman at New Albany High School and a regular at the Heit Center. Feedback welcome at adeperro@cityscenemediagroup.com.

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