Katie Needs Our Help

In late November of 2016, Katie became very ill and unknowingly started an 18 month journey of a mystery illness that has finally been diagnosed recently as “Alpha-1” or alpha1-antitrypsin deficiency. This is a genetic disorder, it is a deficiency of the Alpha-1antitrypsin protein.  The alpha-1 protein is mainly produced by the liver and its main function is to protect the lungs from inflammation caused by infection and inhaled irritants: such as pollen, campfire smoke, fragrance etc. The ultimate “cure” for Alpha-1 is a liver transplant. For now, Katie’s liver is functioning above the transplant guidelines.  Until a liver transplant is available for Katie treatment of the main symptoms includes weekly plasma infusions and potential lung transplant.

While many genetic disorders are on a spectrum of the effects caused, Katie has been diagnosed with a rare form of Alpha-1, in which even before age 40 she is having liver and lung symptoms that are becoming more intense and even more debilitating.  (For more general information on Alpha-1, please read here .)  

For Katie, the symptoms have left her unable to do normal life things like go for walks, jogs, or do yard work- and Katie is a lover of all things outdoors. She has already had to take countless days off of work for appointments, hospital stays, medical procedures, and the very real but frustrating lack of energy/ability to do her work.  It is only within the last two weeks, a full 18 months after becoming ill, that she has finally been diagnosed. She is still in the “finding out” stages about her liver and lung function and we will post updates as we learn more.


What Katie needs is to feel some relief about upcoming finances.  We honestly don’t know all this is to come. We do know there will be missed work in the future, we do know she needs help at home while she tries to regain some strength, we do know there will be travel costs for treatments/testing that comes with having a rare disorder.  One of the hardest parts of long term illness is trying to catch up to what is already behind or affected by the gaps in work... while also trying to sort out this life-changing diagnosis and get information about how to get help and move forward.


As a lactation consultant and a postpartum doula, as well as a nanny, Katie has helped and given so much love to so many families. Literally helping to love and nourish the world one mother/baby/family at a time. She has a huge heart and loves her work, but until she can get some treatment she doesn’t have the stamina to maintain the necessary workload to support her family. We can help her, as her friends and family, by raising money to get her more stable financially for now, and help keep Katie from overtaxing herself while she tries to get on a road toward treatment of the symptoms of this lifelong illness and back to being more like herself again.