My sweet young friend, Lilah, and her wonderful, devoted mom and dad, need our help. Lilah is the bravest, most adorable, most extraordinary young lady I know - qualities she gets from her mom and dad. Her mom posted a recent video of her and wrote, "Her little face. Her little tears. Her head nods to assure me she is being strong, but you see her defeated... Nothing I can do, and I just wish it was me instead".

Lilah and her mom are staying in the hospital together (for weeks) in Seattle, while her dad is staying an hour away with Lilah's little brother Howie in Graham. Mom and dad's ability to work has been impacted because they put their children's well-being first, and the bills, including serious medical bills, are piling up. Lilah has health insurance which is refusing to pay for her first stay at the Mary Bridge hospital because she was given a wrong diagnosis. After over a month of hospitals, doctors, specialists, drugs, tests, there is still no diagnosis, and Lilah is still seriously ill. There is no care plan, no diagnosis, no end in sight until a diagnosis is discovered and a treatment plan is in place - and every day more bills, more stress for this family. Mom wrote their story, below. I love this family with all my heart. Please help!

From Lilah's mom:

"Lilah presented with a fever and what I thought was strep throat on 5/4 – per urgent care, she did not have strep and only had allergies. She then presented with what I thought was a normal bug bite on 5/13 – we treated it as so with Benadryl. The initial red bump became very swollen and painful, and she could not walk or put pressure on her leg. We went to Mary Bridge, where they treated her for a suspected cellulitic infection, drained the initial wound, and sent us home with antibiotics. (May 16-17). On May 19th, we had a hospital discharge follow-up with our pediatrician, where Lilah presented with multiple swollen red nodules on her legs. We were advised to return to Mary Bridge, where they admitted her again because her blood counts were abnormal, she was immobile, and she had high fevers. We stayed at Mary Bridge from 5/19 – 5/21; they discharged us with a suspected diagnosis of Crohn’s disease or another rheumatologic autoimmune disorder – they sent us home with an antibiotic because her white blood cells were elevated, with referrals to Rheumatology & Gastroenterology. She was diagnosed with Erythema Nodosum during that stay – which is usually an immune response, has no treatment, and can wax and wane for days, weeks or months. Lilah received three doses of the antibiotic at home. I followed up on every referral – all offices were not accepting new patients because their offices were at capacity, and I couldn’t get in to see her pediatrician for six days – post-discharge. While waiting for her follow-up pediatric appointment, Lilah broke out into a full-body rash on 5/23. I returned to Mary Bridge on 5/23 and stayed in the Emergency Department overnight. They advised me to stop all antibiotics - they now suspected Lupus as the diagnosis and cause for her symptoms. They again gave me a referral for Rheumatology and told me to keep my upcoming pediatric appointment. We went home, and I visited her PCP on 5/27. They did not feel comfortable treating her because they didn’t have the ability or expertise to treat or diagnose any autoimmune disorders. They advised me to go to Seattle Children’s; we arrived on 5/28 - Saturday morning and have been admitted since.

During this stay, they ran over 100 tests ranging from CBC, viruses and bacterial infections, autoimmune disorders, oncological testing, gastro tests, etc. She has undergone X-rays, MRI’s, CT scans, EKG, Echo and Bone Marrow Biopsy. There are some abnormal findings but nothing definitive to diagnose or treat. They have given her IVIG, a strong drug with many side effects; she suffered greatly from migraines, vomiting, and dizziness. They started her on steroids in hopes they were treating Bechet’s; they stopped steroid therapy and are waiting for more test results because this test came back negative. They gave her a blood transfusion on 6/6, which improved her blood levels, but they are still in their decline as expected. At this time, they believe the answer is in her bone marrow – Why is she not producing enough Red Blood Cells? Why are her platelets stressed? What are the abnormal cells? These tests can take a week or longer to come back, and due to her steady decline in blood labs, we will likely not be discharged until the earliest next week. The tests are searching for genetic disorders or acquired disorders but will not have results for up to 3 weeks. Our primary medical team is working more closely with Rheumatology and Hematology-Oncology. If and when we discharge, we will need blood draws twice a week as she may need another transfusion while we wait for test results. We are scheduling two skin biopsies with dermatology to culture the painful nodules.

We currently do not have a care plan – and do not have a diagnosis."