Search Results

Holly's new jaw reconstruction. Gorham-Stout Disease patient. As many of you know, I live with a rare condition called Vanishing Bone Disease . This illness has taken my jaw twice and has completely changed how I live day to day. Right now, I rely on a feeding tube for all my nutrition and hydration while undergoing ongoing treatment. I’ve been patiently waiting for a full jaw reconstruction, which was originally scheduled but had to be postponed. My oral maxillofacial surgeon and ENT oncology team are currently working to customize a joint replacement along with the jaw to make sure everything is just right. We’re expecting my surgery to be officially scheduled this week, with the procedure planned for sometime in December. Although these changes have brought challenges, they’ve also given me a greater opportunity to advocate and share my story. Life doesn’t always go as planned, but I’ve learned that it’s in these moments we must learn to pivot, stay hopeful, and keep a positive attitude no matter what comes our way. Thank you all for your continued love and support.

Recently, I had the incredible honor of officiating my very first wedding right here in Phoenix. I saw a post from a couple asking for help on Facebook, and something in my spirit told me to reach out. I’m ordained, and I knew this was an opportunity to serve. The couple is currently living out of their car. They’re less than 30 days sober, employed, and deeply in love. What moved me most was how fiercely they support each other through life’s toughest battles. Their strength, resilience, and commitment to one another left a mark on my heart. The Lord makes no mistakes...He brought them together, and He brought me to them. I’m grateful He allowed me to be part of this moment. To the newlyweds: you have my full blessing. Keep fighting for each other and for your future. Congratulations!

I am excited to share that adults over 21 on AHCCCS will now have access to speech and swallowing therapy a huge win for health and dignity in Arizona. This change came down to the wire in budget negotiations, and it passed because so many spoke out and continuied to advocate and it made all the difference. This will change lives and even save the state money in the long run. https://www.bannerhealth.com/newsroom/press-releases/bill-passage

#RareAcrossAmerica Honored to be able to share my story with our legistlatures and staff, with the Rare AZ team! Our Asks... • The Accelerating Kids Access to Care Act LLS urges Congress to support H.R. 1509 / S. 752, the Accelerating Kids' Access to Care Act (AKACA). This bipartisan legislation, which unanimously passed the House of Representatives in September 2024, removes red tape that prevents children with cancer from accessing the specialized care they need. • The Give Kids A Chance Act The Give Kids a Chance Act will keep this voucher program going until 2029. The program stopped on December 20, 2024, when the bill was not passed before that day. The longer this program goes on, the more likely it is that new medicines for rare pediatric disease will be made. • Protecting Federal Funding for Medical Research   A proposed $20 billion cut to federal research would stall or end progress for thousands of patients, especially those with rare diseases who rely on government-backed science. #rarediseaseadvocate #CareAboutRare

Titanium jaw replacement using fibula. #phantombonedisease #gorhamstoutdisease #vanishingbonedisease #rararediseaseawareness Images on the left show my jaw from a few months ago, and the right side shows the plan for my upcoming surgery. This will be my second jaw replacement, using my right fibula and a skin graft from my thigh. After this procedure, I won’t have any more bone left to use for rebuilding. It's a lot to process, but I'm mentally preparing myself for the surgery and the recovery ahead. “Let my soul smile through my heart and my heart smile through my eyes, that I may scatter rich smiles in sad hearts.” ~ Paramahansa Yogananda

Celebrating 35 years, American's with Disability Act #ADA #DisabilityPride #RareDiseaseWarrior Supporting people with disabilities, living with challenges, on Medicaid.

Arizona House of Appropriations SB1207, 3/26/2025. Thank you to our sponsor Senator Leach (LD17) and all of our great Representatives. Special thanks to The Arizona Speech-Language-Hearing Association (ArSHA). Of course my awesome Speech Pathologist Leah Mackie at Banner MD Anderson thank you so much! Dr. Shawn Stevens (neuro-otology) spoke on the importance of cochlear implants. To all the patients this will help, together we can make a difference!

https://globalgenes.org/story/strength-in-struggle/ Thank you Global Genes for sharing my story!

Today, was my last day at the Queen Creek Family Market. Until next year. It is getting too hot for me and I am sensitive to the sun. I will be accepting custom orders via email. Please click the More section at the top of this site, scroll to Holly's Handmade to view gifts, and more details. Email: hollysgsdjourney@gmail.com Subscribe to my YouTube Channel!

At the Arizona Legislature speaking about the importance of speech therapy for AHCCCS patients.

Honored to be advocating beside so many amazing people. The inspiration and empowerment I have gained from this experience is priceless. Together we are strong! Thank you to all the Rare Disease Legislative Advocates that showed up to represent for our rare disease community. #RareDC2025 Thank you, EveryLife Foundation for hosting this awesome event. https://everylifefoundation.org/

Thank you Arizona! For recognizing Rare Disease Day February 28, 2025 We are now the 31st state to have a RDAC-Rare Disease Advisory Council Rare Advocates and the Arizona Volunteer State Ambassador for the Rare Action Network powered by National Organization for Rare Disorders, Inc. (NORD) #ShowYourStripes  #RareDiseaseDay Rare Disease Day At The Capitol & HB2380 Rare Disease Advisory Council