 Kelly Wallis's religious faith has always played a very big role in her and her family's lives. It's been one of her pillars of comfort and reliability along the otherwise tumultuous and uncertain Sanfilippo (and cancer) journey that she finds herself on. Which is why it saddens her deeply that oldest daughter Abby (now 28, with Sanfilippo Syndrome type A) is no longer able to attend church services anymore - because of the ravaging effects that Sanfilippo Syndrome has had on her mind and body over the course of her life. "The sad thing is that the people at church don't even know Abby anymore".  Kelly Wallis of Houston, Texas, is the loving mother of 2 (now fully grown) daughters -- Abby (age 28, diagnosed with Sanfilippo type A (attenuated) at age 22), and younger sister Emily (25), who is now a 1st grade teacher in Texas. Kelly is the (longtime) organist at her church in Houston, and she told me that she finds great personal meaning, purpose and satisfaction in playing the support/ background role that she plays in her church's choir. After all, she's not somebody who likes to be in the front and center, and she doesn't seek credit for her actions - she just wants to be part of something bigger than herself - for the common good - and her church community and religious faith clearly help provide that for her and her family. Following Abby's Sanfilippo diagnosis several years ago, Kelly and her family created a fundraising/awareness campaign called Abby's Alliance (in partnership with the Cure Sanfilippo Foundation, a 501(c)3 non-profit dedicated to funding therapies and clinical trials for children with Sanfilippo Syndrome). And then in 2019, Kelly became a monthly contributing columnist for an online magazine called Sanfilippo News (under the BioNews brand), in which she writes openly and (sometimes brutally) honestly about the Sanfilippo/rare disease life based on her family's own experiences along this journey. It takes courage to put yourself out there like that and share your story with the world, but Kelly has learned that it's also an empowering and therapeutic way to "let it all out" and share your story with the world - and other parents who read her articles are grateful for her giving public voice to their own trials, tribulations, fears and stories. Here's a link to Kelly's most recent column: https://sanfilipponews.com/columns/how-were-honoring-gift-from-sanfilippo-child-her-family/. Kelly herself has had more than her fair share of obstacles and health challenges over the past 7 years - having been diagnosed in 2015 with cancer (which later metastasized in her lungs), followed by the ultimate vicious blow the very next year (2016) when her daughter Abby was diagnosed with Sanfilippo Syndrome at the age of 22. Talk about a one-two punch. But Kelly refuses to "live in a cancer bubble", as she told me. There's too much life to live, and too much to be grateful for. Kelly's religious faith has always played a very big role in her and her family's lives. It's one of her pillars of comfort and reliability along this otherwise tumultuous Sanfilippo (and cancer) journey that she finds herself on. But even though her church has been so pivotal and such an important part of her life, it now saddens her deeply that Abby (now 28) is no longer able to attend church services anymore - because of the ravaging effects that Sanfilippo Syndrome has had on her mind and body over the course of her life. "One of the saddest things is that the people at church don't even know Abby anymore", Kelly heartbreakingly explained to me. "These days, she can be very noisy and disruptive during services, and I do not want her to distract from the service for everybody else - which is why we felt like we could no longer take her with us. But I still have to be there, regardless, because I'm the organist". Click the link below to watch Kelly tell it. The sad thing is that the people at church don't even know Abby anymore. These days, at age 28, she can be very noisy and disruptive during services, and I don't want her to distract from the service for everybody else - which, sadly, is why we felt like we could no longer take her with us. But I still have to be there, regardless, because I'm the organist" To watch the full interview (25 minutes) with Kelly, click the link below:
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12/12/2023 09:56:37 pm
May God bless the Wallis family, as well as all of the Sanfilippo families. Leave a Reply. |
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Mike Dobbyn, Archives
June 2024
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