Mar 23, 2019 Latest post:
Apr 21, 2019
Addison used to be a perfectly healthy kid, active in school and sports. Then everything changed. On January 29, 2018, she came to me complaining of a sharp pain in her right side. We went right to urgent care, thinking that it was her appendix. The doctors ran a CT scan and bloodwork and came back with no answers. They admitted her in the hospital and ran test after test but came back with no answers, everything looked normal, but still Addison was in pain and it was getting worse.
It became painful to move and painful to eat, then the vomiting started. She couldn't hold down food or water. She lost 20 pounds in just under two months. She missed 60 days of school during the spring semester of 7th grade, but still worked hard from her hospital bed and then her bedroom at home to maintain her 4.0 GPA.
Over the summer, her joints became more and more painful. Now her symptoms started pointing doctors in a different direction. She was diagnosed with hEDS - a hypermobile form of Ehlers-Danlos Syndrome, a degenerative disease that causes unbelievable pain as her joints dislocate dozens of times per day. Along with this came POTS, another disease that causes Addison to have low blood pressure, a high heart rate, and black outs whenever she stands up. To complete the trifecta, she was diagnosed with MCAS - her body sends an allergic response to unusual triggers. Her biggest trigger is the hormone estrogen and puberty had just started. Her body literally attacks itself every single day. Not one moment of her life is pain free.
We've tried the doctors at Randall's and Doernbecher's Children Hospitals in Portland but they have no treatment options. She's on a feeding tube to help get her weight back up to normal and combat the stomach paralysis and extreme pain while eating. She goes to physical therapy twice a month to help learn how to pop her joints back into place and strengthen the muscles to minimize dislocations. She misses school multiple times per week due to pain, weakness, and inability to make it through the day without blacking out and can only do half days when she attends school now. She misses out on time spent with friends and can't do most normal teen activities.
The doctors have run out of treatment options here and have pointed us to a month long pain rehabilitation clinic at Mayo in Rochester, MN that deals specifically with kids with her trifecta of symptoms. They are miracle workers according to other parents whose children have made it through this program and graduated from it able to go to school full time again and live a normal teenage life. A month ago, she was accepted into the program at Mayo.
This is Addy's best hope of finding relief from the pain and entering high school next year with a chance of making it through her classes and going to college, to fulfill her dream of going to medical school and helping other kids who are going through what she has experienced. She's kept a great attitude and a big smile throughout this whole process, trusting in God to get her through it all and bring her out the other side stronger. She knows that God has given her this challenge for a purpose.
We're heading to Mayo now to start the program. The start date for the program is March 26th so we're traveling out there on March 25th and getting home just in time for Easter. We wanted to put her story in one place that we can share with everyone who has blessed us with prayers, encouragement and donations.