My name is Kristine. My husband, Hector, is fighting two rare autoimmune diseases—Inclusion Body Myositis and Aplastic Anemia. He needs a bone marrow transplant that carries frightening risks. He continues to push his body to go to work every day, despite exhaustion and pain, because our medical insurance depends on his employment. We don’t know how long he can keep going, how long his coverage will last, or whether we will face a blackout period with no insurance at all.

We are a hardworking couple in our early fifties - suddenly facing medical bills, loss of income, home accessibility needs, the need for mobility equipment, and college costs for our son. I am a mental health coach who has spent my life helping others. Today, I’m asking for help for my own family—to keep us safe, and stable.

Any support—financial, sharing this page, prayers, or registering as a stem cell donor—means more than I can express.

Our Family’s Crisis

My husband, Hector—father to our sons Xavier and Mateo—is fighting two rare and devastating autoimmune diseases: Inclusion Body Myositis and Aplastic Anemia. Inclusion Body Myositis is progressively destroying the skeletal muscles throughout his body. The damage started with his legs, in 2020. Inclusion Body Myositis has no known cure. It is incredibly rare and treatment resistant. It is an inflammatory response, and we have no idea what caused it. Aplastic Anemia is also rare, and it is life threatening. It is causing his body to produce dangerously few platelets (the cells that make your blood clot). He is also producing fewer red blood cells, which carry oxygen throughout the body, and white blood cells, which fight infection. Altogether, this means that he has a muscle disease that is taking his mobility and independence and causes him to be prone to falling – combined with a blood disorder that makes it harder for him to fight infections, causes him to constantly feel fatigued, and creates the risk of bleeding to death if he hits his head in a fall. Each of these independently is very rare – for one patient to have both is like having lighting strike you while you are indoors. When we joke (because sometimes we must), we say that one day Hector’s case will be an entire textbook that future doctors will have to study. The only remaining option to help him now is a bone marrow transplant.

A Complication That Changed Everything

During a pre transplant evaluation, doctors discovered Hector’s muscle damage is far more advanced than we knew. Chemotherapy can further damage skeletal muscle—and for Hector, this risk could mean permanent loss of mobility. Because of this, his care was transferred to Columbia Presbyterian, where rheumatology and neurology specialists can oversee his transplant.

We are now working toward a transplant date in mid September.

The Financial Reality

Right now, we do have medical insurance—but only because Hector is still working. He continues to push his body to go to work every day, out of an enormous sense of responsibility to provide for us and to keep our health coverage intact. This man is so strong. He is my rock. It breaks my heart to watch him force himself to work when I know what it costs him—the exhaustion, the pain, the strain, and the way stress likely fuels inflammation and can accelerate his disease.

He is trying to continue working until the very last possible day before he is hospitalized for the transplant. But his conditions continue to progress and I don’t know how long he can realistically continue.

We also don’t know: 

• how long his employer will keep him on their insurance once he enters the hospital
  
• What the financial or insurance picture will look like when he goes out of work

We have already experienced the financial fallout of his declining health. Two and a half years ago, Hector had to leave a higher paying job in the city because his mobility issues made the commute impossible. 

I, too, have suffered income loss. I work for a mental health nonprofit agency. Due to budgetary difficulties, the agency was forced to make an across the board payroll reduction last November. I lost nearly 20% of my income then – and it still has not been restored.

Even if the transplant is a success, Hector will be out of work for up to a year. At the least, we are facing:

• 2 Months of medically required housing near the hospital

• Loss of his income

• Medical bills

• Home accessibility renovations

• We need a powered wheelchair ASAP

• College tuition for Mateo, our youngest, who will be starting college this fall

We are a middle-class family—the kind that earns too much to qualify for aid, but not enough to manage a crisis like this.

Seeing the World Differently

When you lose mobility, you see the world through new eyes. Chairs in restaurants are too low. Floors in stores are dangerously slippery. Suddenly,  lots of your own furniture is no longer appropriate.

The Life We Built—And the Dreams We’re Losing

Nearly 30 years ago, Hector and I met at work and became friends. Two years later, we fell in love on the dance floor. Dancing was our joy. I would give anything to dance with my husband again.

We dreamed of traveling—Machu Picchu, the giant redwoods, Alaska, the northern lights. Now, I am watching as those dreams slip away. I am praying we can stop these diseases before they take anything else.

We both studied psychology and social work, took on student debt, and spent our careers in nonprofit social service agencies—helping families in crisis. This work doesn’t pay well, but it matters. It is surreal and painful to now be the ones who need help—and not qualify for it.

Our Sons

Xavier, recently graduated, is working hard to pay his student loans. Mateo, just starting college, chose the most affordable school available to him—but even that leaves us with a monthly tuition bill that is higher than our mortgage.

Both boys help their father with his mobility. (climbing the stairs, standing from chairs, and navigating uneven surfaces). They took on all the heavy housework their father can no longer manage. They are afraid for him, but they are strong. They try not to show their worry in front of us. They don’t want to burden us. That’s not how things should be, but that’s how they are. Our young men are extraordinary sons. It is also an incredible blessing that they are best friends.

A Mother Trying to Stay Strong

I am a mental health coach. I teach people how to navigate hardship: developing awareness of their problems and needs, accepting their reality without judgment, finding a compelling reason to change, taking an inventory of their resources, and mustering the courage to ask for and accept help.

For six years, I’ve coached myself through this crisis. This journey has tested all my skills. I am at the part of my journey where my resources are insufficient to meet this moment. I have had to start asking for and allowing myself to accept support and help from others. I have had to allow myself to cry on the shoulders of my closest friends, and now I must ask for financial help from strangers. The main resource we cannot generate on our own is money - for all that we will need while going through the transplant process.

I am not comfortable with handouts. As I write this page, I feel as though I am betraying my family’s privacy, but I know we need help to deal with this.

My “Mess” is Becoming My Message

If you are able, please consider becoming a donor. Whether you choose to donate blood, stem cells or organs, if you can do so - please step up. Even if you aren't my husband’s donor, you may save someone else. A stem cell donor is not harmed by donating—it’s no more invasive than giving blood. But for the recipient, it is the gift of life.

So many people these days are angry and hopeless. So many of us are focused on seeing the differences between us, what separates us. We are so busy focusing on our differences that we forget how very much we have in common. 

And there is so much more that we have in common. I believe that we can change the world we live in for the better by remembering what we share: we are flesh and bone. We love and we hope. We all have loved ones, goals and dreams. We need each other to survive. And we all deserve the opportunity to fully participate in the world.

When this storm ends—and I must believe it will—I intend to help others find their way out of similar darkness. That is my purpose. That is my future.

How You Can Help

Please donate what you can. If you cannot donate financially, please know there are still meaningful ways to support us:

• Share this page

• Send prayers, positive thoughts, healing intentions

• Register as an organ or stem cell donor – you never know - the stranger whose life you save might teach your child in school, pull you from a car wreck, or save you from a fire one day.

Any support—in any form—helps us breathe, gives us hope, helps us keep going.

Our Family’s Hope

We are fighting for Hector’s life, for our futures, for Mateo's education, and for the stability of our home. Thank you for reading, for caring, and for standing with us during this unimaginable time.