 Julia Berzoy lives in Florida and is the mom to son Lucas, who was diagnosed with Sanfilippo Sydrome (type C) very recently, in late 2022 – a distressful year for her and her family, to say the least, given that a lot of her family members still live in Ukraine. She recently participated in a Sanfilippo Roundtable chat with other Sanfilippo parents, where she shared her story about her son's path to a diagnosis and navigating life following this devastating news. 
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 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:  Sanfilippo mom Perriann feels fortunate to reside in the state of California because of a work-from-home program ('IHSS') available to California residents that is intended for parents and caretakers of children with severe special needs. This program has allowed Perriann the gift of being able to watch her daughter Reyna grow (and change) during these precious and pivotal years.  Perriann Nieto lives in Riverside, California - with husband Armando (a flooring specialist) and their six (combined) children - about 50 miles southeast of downtown Los Angeles. Perriann's 8-year old daughter Reyna has Sanfilippo Syndrome (type A) - a neurodegenerative condition commonly referred to as "childhood Alzheimers" (only worse). Perriann's got a lot on her plate these days, with her daughter's seemingly never-ending slew of medical challenges (related to the disease) which are wreaking havoc on Reyna's mind and body. It's hard enough in today's world to raise and provide for a 'typical' family - never mind for a family raising a child with a relentless and debilitating disease like Sanfilippo Syndrome. In fact, here's an interesting (and depressing) piece of information -- A recent research study on the topic of financial stress on special needs families found that the average Sanfilippo family will suffer a cumulative 'dent' to their financial Net Worth somewhere in the range of $1 million (net 'hit' to net worth) over their lifetimes - all because one or more their children happened to hit the genetic sh*t lottery (1 in 75,000 odds) upon conception. That's a pretty darn big dent. During our conversation, Perriann told me about a work program that's available in her state (California) which allows parents/caregivers of severely disabled children/family members to stay home and get paid as a primary caretakers - in her case, for her daughter Reyna. It's a program called IHSS, which stands for In-Home Support Services - and it's been a godsend to the Nieto family. As Perriann stated, "It has been a big relief for me and my family - because it's allowed me to stay home, watch Reyna grow during these precious years, and not have to worry about somebody else needing to take care of her for me". According to Perriann, there aren't many (if any) other such programs out there in other states - at least not any that are nearly as generous and supportive as the one available in the state of California. In fact, that ended up becoming the deciding factor recently when Perriann and Armando were considering a move to another state. There simply wasn't anything out there (in other nearby states) that would replace it, income-wise, for a stay-at-home caretaker mom in Perriann's shoes. The family had no choice but to stay put in California. Following our conversation, I was eager to learn more about this IHSS program. Here's the website for IHSS, for those interested in learning more: https://www.cdss.ca.gov/in-home-supportive-services. And here are a few tidbits of information that is straight from the IHSS website: "The IHSS program provides in-home assistance to eligible aged, blind, and disabled individuals as an alternative to out-of-home care and enables recipients to remain safely in their own homes". Also from the website --- Eligibility criteria for all IHSS applicants and recipients include the following: 1) You must also be a California resident. 2) You must have a Medi-Cal eligibility determination. 3) You must live at home or an abode of your own choosing (acute care hospital, long-term care facilities, and licensed community care facilities are not considered "own home"). 4) You must submit a completed Health Care Certification form. It has been a big relief for me and my family - because it's allowed me to stay home, watch Reyna grow during these precious years, and not have to worry about somebody else needing to take care of her for me"   Tennesse Sanfilippo cop dad Shaun O'Neal, inspired by his son Kiernan's courageous battle with Sanfilippo Syndrome, started up a brand new task force within his police department to help educate and mentor his fellow law enforcement officers about the best way to approach citizens that may have special needs - with empathy, understanding, patience and an open mind.  Tennessee native Shaun O'Neal is the proud father to 4 kids and clearly a happily married man (to wife Amanda), with a contagious gratitude for life and a 'never quit' attitude that has served him well in life - particularly in times of stress, anxiety and even fear. Shaun's dedicated, 23-year career as a law enforcement officer in his community has shaped the man that he is today - and he's used many of those qualities, lessons and acquired skills to help his son Kiernan (8 years old) and his family of 6 battle Sanfilippo Syndrome. He's also an impact maker in his community - even heading up and leading a task force at his police department that is focused on helping officers recognize and properly handle situations arising from community members that may have special needs. After all, many of these individuals perhaps don't even understand that what they're doing is even 'wrong'. Inspired by his son's Sanfilippo journey, Shaun is creating positive change every day in his community. This wouldn't have happened without his Kiernan's shining light guiding the way. I asked Shaun about how he and his wife Amanda function as a team when it comes to tackling and navigating the Sanfilippo Life with their 4 children. He told me that Amanda is the researcher - she wants to understand every single, minute detail about everything. He told me - and she agrees - that it's because "At least doing the research gives her the illusion of control" - which, as many of us know and have experienced during our Sanfilippo journeys, becomes somewhat of a psychological need when your life gets suddenly thrown into chaos, uncertainty and fear. "As for me", Shaun stated, "I'm really, really good at mentally compartmentalizing - and, mind you, that's not always a good thing - but it's just the way I handle things". He went on to tell me, "I don't think about the long term often - and I never quit. I never throw in the towel". Click the video link below to hear Shaun tell it. I don't think about the long term often, and I never quit. I never throw in the towel"  |
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Mike Dobbyn, Archives
June 2024
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