Courtney's Fight

As some of you know my daughter Courtney became very ill in May of 2017. For all her life she was very healthy Almost on a daily basis she was having episodes of anaphylaxis resulting in her airway closing. The doctors were stumped on what was causing Courtney to have these episodes of anaphylaxis since they were happening at all times of the day and even while she was sleeping.   Over the length of a year Courtney was spending more days in the hospital than she was at home. Specialist after specialist in the healthcare system she was seeing kept coming up with the same answer of “we do not know”. After a year of dozens of ICU and hospital stays we decided to get a second opinion from a doctor at OHSU. After over a year of no answers a doctor at OHSU finally did extensive testing showing that Courtney had something Mast Cell Activation Disorder. This was great, she finally had a diagnosis, but it was also a diagnosis that comes with some hard news, there is no cure for Mast Cell. MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing. This disorder is so newly discovered that her doctor at OHSU sent her to meet a doctor in Bend, Oregon who treats her disorder and treats the most critical patients. currently there is no cure  When we went to go meet the doctor in Bend he immediately started aggressive treatments. After over a year of ambulance rides, multiple breathing tubes, ICU stays and hundreds of Epinephrine doses, ,we had found the doctor that truly wanted to help Courtney and ended up saving her life. She was immediately started on a continuous Benadryl infusion through a central line . This completely changed her life for the better. Courtney went from living in the hospital to going over 6 months with no ER visits.. The last year or so things have gone downhill for her. When getting her diagnosis she knew that this disorder can effect every single system in her body and that’s what it has done to Courtney which has been devastating. Between her weekly lab draws, hospitalizations, and medications she is struggling right now. As a family, and also my doctor we have discussed that her living in Sandy, Oregon and traveling to Bend for doctors appointments is becoming harder and harder and she is become more ill . Our family agrees that Courtney deserves to be close to the team of medical professionals that have helped her so incredibly this past year and a half as it has become dangerous not being close to her medical team that knows her very well. The care that Courtney has received at the hospitals around Portland has been very poor since not a lot of people know about This disease has taken about everything from Courtney and has been so hard to watch. She is now not able to eat much of anything and rely on TPN (food from IV) which she is connected to 24 hours a day along with the Benadryl. I want to help her bi starting this fundraiser to help her move to Central Oregon, not only to be closer to the professionals that never doubted me and are also there to help me. I know now it's getting to be too much driving from Gresham to Bend multiple times and months. With this money we are hoping to get Courtney over to Central Oregon and also help with the stack of medical bills and other cost she has right now.With everything she has for the past 4 years and now it's time to help her live her life to the fullest for however long she has left.She has spent the last four years in total misery. She deserves to be closer to the hospital and be closer to the doctor who has saved my life.