Hi, we are Christian and Gabe, and we're writing this for the most important person in our lives—our mom.

Our mom, Carmen, is truly one of a kind. She’s a clinical therapist, an advocate, a rare disease educator, and someone who has spent her entire life helping others. She’s also the woman who raised us with so much love, strength, humor, and resilience. Now, she’s in the fight of her life, and we’re asking for your help.

Our mom lives with Hermansky-Pudlak Syndrome (HPS)—a rare genetic condition that causes albinism, bleeding disorders, and, in her case, pulmonary fibrosis, a progressive and terminal lung disease. She’s spent her life managing the complications of HPS with courage and grit. But pulmonary fibrosis is different. It doesn’t wait. It doesn’t pause. And it doesn’t get better without a lung transplant.

She’s been through more than most people ever will—emergency surgeries, life-threatening hemorrhages, and being told by some doctors that she wouldn’t survive. Still, she’s spent years educating others, advocating for patients, and raising awareness so that people like her would be seen, heard, and understood.

Because of the many blood transfusions that saved her life in the past, our mom has developed a very high level of antibodies (called PRA), which makes it extremely difficult to find donor lungs that her body won’t reject. For a long time, doctors said she wasn’t eligible. But if you know our mom, you know she doesn’t take no for an answer. She fought to be seen. She learned everything she could. She worked with experts. She proved them wrong.

In December 2021, she was listed for a double lung transplant at Brigham and Women’s Hospital in Boston—a team that believes in her as much as we do. They know it’s a long shot. But they’re willing to try. And so are we. Now she is getting treatment at NYU to reduce her antibodies, and we are hoping this treatment will improve her chances of getting new lungs!!

We’re doing this because we want more time with our mom. We want her to be there for graduations, birthdays, holidays, and quiet Sunday mornings. We want her to breathe freely again, without oxygen tanks or the fear of what tomorrow might bring. She deserves that.

We’re raising funds to help cover:

• Housing near the transplant center

• Medical bills and out-of-pocket costs

• Travel and lodging for appointments

• Recovery and rehab support after surgery

• Missed work during the transplant process

We know times are tough, but if you’re able to give, please know it means the world to our family. Every donation brings our mom one step closer to the gift of life. And if you can’t give, sharing this page is just as powerful.

Thank you for reading our story. Thank you for loving our mom. And thank you for believing in miracles.

With love and hope,

Christian & Gabe

#TeamCarmen