Support Rob Bailey's Lung Transplant Journey

Hi my name is Angela Merkens. I am a friend of Rob and Dawn Bailey.

Rob Bailey is an amazing human being! He has been married to his incredible wife for 32 years! Rob Bailey was born with a rare genetic disorder, Alpha-1 Antitrypsin Deficiency (Alpha-1), genotype MZ.

Diagnosed in his 40’s due to shortness of breath, he was already down to 30% lung function. He has been on maximum therapy for over 10 years. After going on oxygen at night in 2010 he had to quit working in 2013 when he needed oxygen 24/7. He is the most compliant patient I know. He takes himself to pulmonary rehab 3 times a week for almost 10 years now, goes without fail to his weekly infusions, and never misses a medication dose. He does extra rehab exercises at home to try to keep himself in the best shape possible as you must be sick enough to be listed for lungs yet healthy enough to make it through the surgery and rehab that comes after.

Rob is now down to 13% lung function and he has been on the list for a double lung transplant since September 15, 2022. Three weeks ago, he got his first call for lungs. Unfortunately, the donated lungs were determined to not be healthy enough to be transplanted (his first "dry run"). This is a good sign, meaning the next time he gets a call for lungs could be real soon!

Rob has been an advocate for the Alpha-1 community for over the past ten years! His amazing wife Dawn was a support group leader for two support groups for patients and their families with Alpha-1! She and Rob both do advocacy work to help increase awareness of this rare genetic disorder! Their drive and determination are inspiring and contagious!

Their nickname is "peanut butter and jelly" and it is amazing to see how they both strengthen each other and keep each other going through all their challenges!

Rob and Dawn live in Illinois and Rob is listed for a double lung transplant at the Cleveland Clinic in Ohio. Being listed for transplant at a center that is more than 2 hours away, there is the possibility of needing a medical flight to get to the center in time. This med-flight could cost up to $13,500 and is most likely not covered by Medicare. Also, they will need to reside in Ohio for at least 3 months for recovery and adjusting of antirejection meds to stabilize numbers. Dawn will not be able to work during this time while she will be learning his medication schedule and all she will need to do to care for him while he recovers.

The cost of transplant, post-surgery care, ongoing medical expenses, and running 2 households while in Ohio can be staggering. We are asking if you could please help Rob and Dawn by donating to help them on this transplant journey! They are fiercely independent and do not like to ask for help and it has been weighing on my heart to do this for them. I am so inspired by them and they have helped so many people!

It is an opportunity for us to come together as a community and provide the support he needs to breathe freely again.

Please join us in this crucial fundraising effort. Your generosity will not only help cover medical expenses but also bring hope and comfort to Rob and Dawn and their loved ones. Together, we can make a real difference in their lives.