Let’s Get Lilja Back!

Let’s Get Lilja Back!

Twenty-four-year-old Lilja Reynald Ingolfsdottir is our beloved daughter. She was a star athlete in high school and excelled academically and creatively. Three and half years ago, she was thriving in her second year of college, aiming to become a Physical Therapist while working as a hostess. Ever since she was a little girl Lilja has had an incredible drive and expects perfection of herself. She was always the one planning activities and participating in everything she could get her hands on. We always called her our "mini CEO".

In January 2020, Lilja started feeling fatigued and dizzy. Within weeks, she became bed-bound and her health was rapidly declining. After years of numerous tests and consultations with specialists, she was diagnosed with Lyme Disease and Bartonella, Mast Cell Activation Syndrome (MCAS), and Hyper-Adrenergic POTs (Postural Orthostatic Tachycardia syndrome).

Please help us support Lilja's journey to recovery!

Here is why we need your help:

In early 2020, Lilja, then 20 years old, experienced a rapid health decline. We took her to the ER four times that year. Initially, tests found nothing wrong, and doctors suggested anxiety. Lilja's condition worsened quickly with dizziness, fainting, and tremors. During the third ER visit, a Cardiologist suggested POTs (Postural Orthostatic Tachycardia syndrome). Although this diagnosis provided some clarity, treatments offered little help. POTs often mask underlying conditions, prompting us to seek further opinions from the Mayo Clinic and Cleveland Clinic. These medical centers confirmed POTs but suspected another underlying issue.

By December 2020, Lilja's condition declined drastically. She was unable to withstand her head being elevated (never the less sit up or stand), and couldn't tolerate heat, noise, or too much light. She was constantly dizzy, nauseous, feeling faint, unable to sleep, and at times was even unresponsive. We took her to the ER again. After much pleading for any kind of treatment, doctors agreed to try Intravenous Immunoglobulin (IVIG) treatment, which turned it around for her. She went from barely communicating to starting to plan for her future and this was the only reason we were able to get her into physical therapy. With home health Physical Therapy, Lilja began to regain strength, became more alert, and began to find her determination to recover.

In 2021, physical therapy was a central focus. Lilja's progress was slow but steady. By mid-year, she became able to sit up for short amounts of time, showing her extraordinary determination and resilience. She work with a physical therapist and occupational therapist 3x a week for 12 months.

In 2023, we found a new Cardiologist/POTs Specialist who recommended the Metrodora Institute in Salt Lake City, Utah. They specialize in complex multisystem, neurological, and autoimmune disorders. Despite Lilja’s weakness, we managed to travel there in August 2023. The testing was exhaustive and taxing, but we completed it. Although no underlying conditions came to a final diagnosis, the tests revealed more information for us to follow to find her core issues. We confirmed Hyper-Adrenergic POTs, allowing us to adjust her heart medication.

By 2024, we continued seeking specialists. Finally, in January, we met with a Rheumatologist who diagnosed Lilja with Lyme Disease, Bartonella, and MCAS (Mast Cell Activation Syndrome). He recommended IVIg (Intravenous Immunoglobulin) treatment. Unfortunately, he does not take our insurance and it is costly. We are currently talking to another doctor (an Immunologist) in our insurance plan who is taking in all of Lilja's medical history and putting together a case to submit to insurance for IVIG treatment. IVIG treatment is estimated to cost $100k.

Throughout all of this Lilja has been extremely strong and determined to push through. Her tenacity and positive attitude have helped us to get to this stage.

How You Can Help:

Despite having insurance, we've faced significant out-of-pocket expenses, including out-of-state consultations/second opinion programs, ambulance trips, medications, and therapies. Over three years, these costs have depleted our savings and we have accrued $20k in debt. We aim to eliminate this debt so we can cover future treatment expenses.

Your support can make a difference in Lilja's journey to recovery. Thank you for your generosity and kindness.