Support Kam's GET BETTER health journey.

My 14 year old daughter Kam is at Riley Children’s Hospital and has been experiencing a major health crisis this has turned her life upside down. 

She has first been diagnosed with Pediatric Systemic Lupus Erythematosus (SLE) more commonly known as Lupus. SLE is a chronic autoimmune disorder that affects major organs such as the brain, lungs, heart, kidneys and joints. Lupus causes the immune system — our natural protection against viruses and bacteria — to mistakenly attack the body's healthy tissue. As a result, this causes inflammation, extreme pain, and damage to the organs. Lupus is also a disease of flare ups (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).  She has also been diagnosed with IgA Nephropathy, a kidney disease. 

In addition to this, Kam is battling an additional mystery illness/disease that is impacting her quality of life in a major way. 

I took Kam to a local ER on August 4th when her persistent abdominal pain was not getting better. They told us they couldn’t find anything wrong and it was likely just a virus and to go home and hydrate and rest. Three days later I took Kam to our PCP and she noticed that Kam’s hemoglobin levels were quite low so she ordered more bloodwork to check it again. It appeared to be trending down and Kam’s pain persisted. We were advised to immediately go to the ER at Riley. We have been here for two weeks.

Kam has had bloodwork (SO much bloodwork), multiple IV’s (and many more pokes for blood because the IV doesn’t want to cooperate), x-rays, ultrasounds, two EKG’s, an echo on her heart, an MRI/MRA, more urine tests and cultures than we can count, a GI study, CT scan, ophthalmology tests, a blood transfusion and most recently, a kidney biopsy.

She has been seen and examined by Hematology, Rheumatology, The Cardiac Team, GI, Nephrology. They have all been great and her Hospitalist team of doctors have been wonderful as well. They were all very committed to determining the proper diagnosis and treatments.

This fundraiser is our humble request to help offset the financial commitment that Kam’s care requires. Yes, we have insurance. We have a high deductible health plan. A portion of the costs will not be covered. Starting this fundraiser to help with this financial burden was not easy. I am a mom. We fix things. We don’t ask for help, we offer it. But my worry and focus must be on getting Kam the best care possible and supporting her through all of this so she can get back to being a kid again. We greatly appreciate any and all help from our friends, family, acquaintances, and compassionate strangers who feel compelled to give.

Of course, do NOT feel obligated if you cannot give. This is certainly not meant to place any kind of burden on anyone else. We welcome and appreciate all of the love, support, snacks, games, meals, texts, flowers, prayers, and more that so many have showered us with. We are grateful for it all.

It is our goal to get Kam into remission as we navigate our new way of life with Lupus but even more important than that right now, is figuring out this mystery illness. We have a lot to learn and a long road ahead of labwork, tests, doctor visits, and who knows where else this will take us. A few weeks ago, Kam was a healthy kid who was so excited as she started her first year of high school and made the JV soccer team. Two days later, we were admitted to Riley and our world turned upside down.

We will update periodically. Thank you from the bottom of our hearts.

Ami, Kam & family