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XLA Stem Cell Research

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Today I flew to Seattle from Los Angeles.

Normally, I fly to Seattle because it’s where I grew up. Seeing old friends and family, etc. But this time is different. It has deeper significance for me.

I am spending the next 10 days working with Seattle Children’s Hospital, Fred Hutchison Cancer Research and University of Washington to be a part of XLA gene therapy clinical studies. I’ll be undergoing a series of injections that will stimulate my stem cells in my bone marrow. These will then be extracted and used for study in mice with the Seattle Cancer Care Alliance to find cures for my hereditary immune deficiency, cancer and HIV treatment.

Sidenote: I was diagnosed at birth with XLA (Agammaglobulinemia) A hereditary immune deficiency where my body doesn’t make white blood cells. I’ve had to have IV’s and antibiotics my entire life to fight off every kind of infection and disease. Shit gets expensive – my medical bill when I was a boy was $4k a month – absolutely insane.

The goal is use my stem cells to find better treatment and cures for XLA. When I was a boy, I would donate my blood numerous times to immunology research and through this, discoveries were made to cure infants via bone marrow transplants. They could be fully cured of their disease if treated early enough. I’m too old to be treated and cured through a bone marrow transplant, but hopefully, giving back through this process this week is a way for science and medicine to advance to better cures and treatment for all immune deficiencies.

Growing up with this disease, I always hid what I had out of embarrassment or shame or regret. It was something that was hard to explain, but the more educated I became about my body and my existence, the easier it has become to share the story. I really shouldn’t be here typing this. Technically I shouldn’t be alive, but science and medicine and health care has made it possible.

I’ve met some amazing people in the medical field over my lifetime. Doctors, nurses, immunologists and caregivers who are passionate about helping others and taking care of others. If you want to find true compassion in society, go hang out in a hospital and you’ll find some wonderful people… the hospital food has gotten much better over the years too.

So today, this week, this lifetime…is my chance to give back to the universe in a way that I hope will advance medicine and technology in a way that I was able to when I was a young boy…only this time, I’m not ashamed of what I am or how my body was created. This is the thing that drives me every day to live life to the fullest, to push myself in ways physically and mentally, to climb mountains, to create things, to seek adventure and to give give give back to this earth.

This is my baptism.
This is my redemption.
This is my salvation.