When Advocacy and Hard Work Result in a Thanksgiving Miracle

This columnist fought to secure physical therapy for her son, who has Sanfilippo

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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During this season of miracles, I invite you to celebrate one with our family.

It happened the day before Thanksgiving, which usually is a day when no work or anything else of consequence gets done because of holiday preparations. My husband and I were figuring out our food-prep schedule and how we’d get to the annual Thanksgiving fun run when the phone rang.

As I’ve shared in previous columns, we’ve been fighting for months to reinstate full therapy services for our son, Will, after insurance denials. Although we’d successfully appealed and reinstated full speech and occupational therapy visits, we were denied physical therapy once again, despite the fact that Will needs it due to Sanfilippo syndrome.

We’d reached the point of needing to schedule a state “fair hearing,” in which, along with our doctors and therapists, we’d present the case for Will’s needs. Keeping up with the paperwork and bureaucracy was stressful and agonizing, plus we had to make sure Will’s medical team could even attend the virtual hearing, given their work and holiday schedules. But we weren’t giving up.

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A marvelous surprise

As we began the fair hearing process, we were asked if we wanted to apply for an external medical review, an optional extra step that people can take to get the case reviewed for free before the hearing. After being assured that a negative review would not affect Will’s hearing, we said yes, figuring it was just another box to check. After the difficulties of the past few months, we certainly didn’t expect much.

So a phone call from our case manager the afternoon before Thanksgiving was highly unexpected. The case manager told us that the external medical review had ruled in Will’s favor! We sat there holding the phone, dumfounded. Did something actually just go right? It was truly a moment of needing to pinch ourselves.

Will’s physical therapist was to be reinstated immediately, the reviewer said, and they’d already notified his therapy office so that scheduling wouldn’t be delayed due to the holiday. I was overwhelmed, and my eyes filled with tears. I called our physical therapist, and we rejoiced together. We had so much to be thankful for this Thanksgiving!

Hard work pays off

Our therapy services were reinstated without a hitch. Our physical therapist was relieved because she knows how much Will benefits from a full therapy schedule. My husband and I were thrilled and shocked that someone had finally realized how crucial continuous physical therapy is to Will’s quality of life.

I was interested in reading the reviewer’s rationale, so when the documentation of the reversal arrived, I opened the envelope and began to skim through it.

And then I stopped when I read these words:

“Per the Sanfilippo syndrome consensus guidelines for clinical care: ‘The therapeutic goals for rehabilitative therapies such as physical or speech therapy should focus on prolonging skills for as long as possible and improving quality of life and functional access to educational and social environments.'”

Why did I stop there? Because those words are direct quotes from the recently published clinical care guidelines for Sanfilippo syndrome, spearheaded by the Cure Sanfilippo Foundation and the Sanfilippo Children’s Foundation! This was an initiative that the foundation we support had helped bring to fruition — one that we and our supporters helped to sponsor through fundraising and advocacy. In doing her research for Will’s case, our reviewer found the document and was able to use the evidence in it to cite Will’s need for care.

Work that we did, work that our supporters did, and work that our foundations did made a direct difference in Will’s life. This realization stopped me in my tracks.

As Will grows older, we sometimes wonder if raising funds and awareness will lead to a treatment in time for him. The global guidelines have now shown us that we can have an impact on his care in a meaningful way. It was the push we needed, especially after all of the trials we’d experienced to get his therapies and Medicaid waiver renewed.

We’d felt like we were spinning our wheels and getting nothing accomplished. Instead, we realized that we’re playing the long game. We’ve been laying the foundation to get things done, and those things will help Will and other kids. After a season of feeling beat down and hopeless, we finally felt rejuvenated.

It was a Thanksgiving miracle, indeed — a much-needed one.

A boy with Sanfilippo syndrome lies on his back on a carpeted floor while a physical therapist kneels over him, working his left foot. The boy has his arms folded on his chest.

Will’s physical therapist returns! (Photo by Valerie Tharp Byers)

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.


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