Join Holly's Battle Against Vanishing Bone Disease
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Quick update! Holly is recovering well from surgery. She has found her passion advocating locally in Arizona as she prepares for her upcoming trip to Capitol Hill. Holly has embraced her challenges and still desires to do more. We gratefully thank you all for caring so much about her. Here are some very important dates she wants to share with you all.
Upcoming Events
February 24-26
Rare Disease Week on Capitol Hill
February 27-28
FDA-NIH Rare Disease Day
Come say hello!!
March 22 & April 26
Queen Creek Farmers Market- Schnepf Farm
February 28, 2025
Rare Disease Day
Show your support by sharing your pictures on social media #LightUpForRare light up your home, landmark, or monument with the rare disease colors pink, green, blue, & purple. #RareDiseaseDay #ShowYourStripes By wearing zebra print or stripes and posting you are spreading awareness.
A note from Holly...
Hello everyone,
I wanted to take a moment to thank everyone for the support you have shown. Thank you deeply for your contribution. From ordering my handmade gifts, to sharing my story, and blog site. I wanted to give a quick update. I have begun my Spring semester. This week I picked up my lab kit, books, and other school supplies. All my scans went well, and my arteries are healthy for reconstructive surgery. I am anxiously anticipating my ENT appointment next month to hear the plan and see the strategy he has for my upcoming surgery. Hopefully, it will be scheduled shortly after this meeting. Your generosity has given me the confidence to share my campaign at the Queen Creek Farmer’s Market. I will be speaking to Arizona’s Legislature about my experiences and the impact of not having speech therapy accessible has impacted my quality of life. Swallowing, speaking, and eating is essential and when you are limited it alters one’s livelihood. I also submitted this photo to a photo contest for people who have rare diseases that are trying to live their best lives. It was with the local legend "Michelin Man" at Cave Creek Regional Park. Your compassion has meant the world to me, and I am beyond grateful for your love and encouragement. I cannot thank you enough for being part of this journey with me. Your kindness is a light in this tough season.
With heartfelt thanks,
Holly
Help Holly Fight Gorham-Stout Disease: A Story of Courage, Resilience, and Hope
Dear Family, Friends, and Kindhearted Supporters,
I’m writing today to share the incredible journey of my daughter, Holly, whose strength, resilience, and optimism have inspired everyone around her. Over the past four years, Holly has faced the unimaginable—fighting an extremely rare and debilitating condition called Gorham-Stout Disease, also known as Vanishing Bone Disease.
Her story is one of persistent determination in the face of pain, uncertainty, and overwhelming odds. And now, Holly needs your help.
The Beginning: A Routine Checkup That Turned Into a Nightmare
It all began with a routine dental exam in South Carolina. What should have been a simple visit turned into a life-altering moment when the X-ray revealed a jaw tumor. This discovery led to the removal of most of Holly's bottom teeth and part of her jaw. The biopsy results initially suggested follicular lymphoma, and Holly braced herself for cancer treatment. But as the doctors began questioning the diagnosis, Holly was left without a clear treatment plan and the support she needed.
Over the months that followed, Holly’s condition worsened. She endured unbearable pain, constant hospital visits, and countless tests and procedures. Eventually, Holly was diagnosed with Stage 3 trismus (lockjaw), which made it nearly impossible for her to eat, speak, or even open her mouth. Yet, despite all of this, Holly never stopped fighting.
A Major Surgery and New Hope
After years of seeking answers, Holly underwent a 10-hour jaw reconstruction surgery where surgeons used a bone from her leg to rebuild her jaw. This grueling surgery was a turning point in her fight, and though the recovery was long and difficult, Holly pushed through with incredible strength and perseverance. Her progress was slow, but for the first time, she felt hopeful.
The New Battle: Vanishing Bone Disease
Just as Holly began to regain her strength, her jaw started to deteriorate again—this time due to Gorham-Stout Disease (GSD), a rare condition that causes bone loss and irreversible skeletal damage.
GSD quickly took its toll, leaving Holly unable to swallow, eat, or speak without assistance. The pain was unbearable, and doctors, unable to find answers, labeled her a “medical mystery.” Holly tirelessly sought help from specialists across the country, determined to uncover a solution.
Over the past year, Holly’s health has continued to decline. She has endured countless surgeries, hospital visits, and radiology exams—so many that trying to track them left her overwhelmed. Despite the uncertainty and pain, Holly refuses to give up hope.
The Road to Recovery
Holly is currently undergoing treatment with Sirolimus and Zometa infusions while preparing for another major jaw surgery. Surgeons plan to rebuild her jaw using bones from her right fibula and shoulder. Halfway through her treatment, Holly continues to fight with incredible strength.
Despite her health challenges, Holly maintains a 4.0 GPA while pursuing an AA in Applied Science. She hopes to become a Radiologic Technologist, using her experience to help others and raise awareness about rare diseases like Gorham-Stout Disease. Her determination is truly inspiring.
How You Can Help Holly
Holly has always been fiercely independent and has never asked for help. However, the financial burden of her medical treatments, education, and ongoing recovery is overwhelming. Holly has not been able to work for the past three years, and her journey is far from over. We are asking for your support so she can continue her battle and keep pursuing her dreams. Here’s how your donation will make a difference:
Medical Expenses: Including speech and physical therapy, medications, special creams, and nutritional supplements.
Dental Costs: Exams, X-rays, surgeries, and hopefully implants.
Living Expenses: Covering rent, utilities, and other essential bills.
Educational Support: To help Holly with college supplies, tuition, and programs.
Travel Costs: For trips to and from medical appointments, surgeries, and treatments.
Recovery Costs: For therapy tools, medical equipment, and rehabilitation.
Future Dreams: Holly dreams of living independently while she continues her education. Funds will help her purchase a lightweight travel trailer where she can live during her studies and clinicals, allowing her to travel and explore while pursuing her goal of becoming a Radiologic Technologist.
Holly’s Dream and Legacy
Despite everything she’s faced, Holly has never given up on her dreams. She wants to use her story to raise awareness about rare diseases like Gorham-Stout Disease and support others who are going through similar struggles. Holly plans to attend Rare Disease Global Events and symposiums to share her experience, learn from researchers, and educate others on rare diseases.
A Final Word
Holly has faced challenges most of us cannot imagine, yet she has met them with grace and unwavering optimism. But she cannot do this alone. Your donation will provide much-needed financial relief and give Holly the strength to keep fighting.
We are deeply grateful for your support, prayers, and encouragement. Together, we can help Holly continue to inspire others and live the life she deserves. Thank you for reading her story. Please share it with your family and friends. Every donation, no matter how small, brings Holly one step closer to recovery.
With heartfelt gratitude,
Marilyn (Holly’s Mom)
Please click the link below to follow Holly on her journey!
Holly & I before Gorham-Stout Disease.
Speech therapy
Holly took me to the botanical garden after a surgery.
Holly at the cancer center.
Holly & I in the hospital, after her first jaw reconstruction.
Close up.
This is a Modified Barium Swallow test. They are done to make sure that food or liquid is being swallowed and nothing is entering the lungs. Holly has them routinely.
Holly adjusting to her new jaw with titanium plates.
Holly loves to be outdoors. Camping is her happy place!
Holly & I visiting Sedona.
First attempt to drain using ultrasound.
Gorham-Stout Disease.
Holly almost gave up this year. She could not swallow and had to get a feeding tube. They also had preformed sclerotherapy to close the veins.
Holly's recent x-ray.
Holly with my eldest son.
Holly wants to share her journey with you!
Organizer
Marilyn Martinez
Organizer
San Tan Valley, AZ