Help Brittany Breathe: Support Her Oxygen Dreams

Hi I am Brittany (Kannah) and am someone living with Charcot-Marie-Tooth Disease Type 4J, a devastating neurological condition similar to ALS. I am fundraising for a portable oxygen concentrator, this is my story.

This is an ultra-rare genetic disease, that has onset rapidly and is considered a progressive disease. There is not much known about what my progression will look like with this disease but doctors have prepared us for what could come, based on how my body is declining we must do everything we can to ensure I am comfortable while I progress. I also have autonomic nervous system failure which causes issues with my breathing. There is currently not a cure for either one of these.

Oxygen is something everyone needs to live and as my disease is progressing, it is impacting my ability to breathe and has caused some near-death situations for me, causing my spouse severe distress while he was waiting for answers from doctors. It is now at the progressive point I need oxygen while asleep and with exertion. Exertion with my disease includes standing, walking, bending, exercising, traveling, this that everyone does to get around typically, create dangerous low-oxygen situations where my oxygen has dipped into the mid 70s. The oxygen deprivation has caused me to feel extremely fatigued, more pain, severe brain fog, and has kept me in bed for months, even more so after my stroke in 2024, which was caused by lack of oxygen.

Through testing we found these issues and the doctor prescribed oxygen to help! Wow what a world of a difference it has made! I feel like I’m not going to die soon. The oxygen is keeping me stable and helping me to get out of bed, enjoy life and be more active out of my wheelchair, with AFOs/crutches without extreme fatigue. My legs have gone from purple/blue to flesh tone, my fingernails have color again, my face is no longer pale. My family and doctors can see a massive difference!

This leads me to why I am fundraising for a portable oxygen concentrator! Insurance covered an at home oxygen concentrator which is huge and 5 green oxygen tanks, that only last 2 hours each, and that I have to carry on my back. I had a spinal fusion in 2017 that has resulted in a failed back surgery syndrome, this causes a lot of pain on my spine to carry around an oxygen tank that has to be on my back while I’m out of my wheelchair. Everyone agrees I should have a portable oxygen concentrator, but CMT4J is not a qualifying condition with my insurance for one. A portable oxygen concentrator would not only last longer allowing me to have longer outings, but would also give me the freedom to travel and advocate, visit my family and fulfill my bucket wish list with my husband. I am stuck in my home on a machine or I am at the mercy of how long my tanks will last outside of the home.

The portable oxygen concentrator system I have been donated is an INOGEN G5! The total needed is to raise now is $1,300. Please share this story, spread awareness and thank you for reading!

I am fundraising for: 

AC Power Supply (G5) × 1 $178 Column Kit (G5/Rove 6™) * 1 $118 Inogen One G5 Particle Filter × 1 $25 

Output Filter Replacement Kit (Inogen One G4/Inogen One G5) × 1 $24 

Standard Battery (G5/Rove 6) * 2 $814