Be part of Kaylee's fight against Dysautonomia

My name is Hope. In 2021, my then 13-year-old daughter Kaylee was an energetic, lively 7th grader who loved to play volleyball and soccer. She performed with various choirs and had many of her art pieces displayed at the Museum of Nebraska Art. Most importantly she was a ray of light to everyone that met her.

In May of 2021, her light went out. She was diagnosed with 4 types of SVT and became bedridden from the medications she was placed on to control her heart and constant episodes of SVT. In August of 2021 she had a cryoablation of her AV node at Stanford University in California. Everyone told her she would feel normal again but that couldn't have been any further from the truth. Kaylee's health has only continued to decline. Finding an accurate diagnosis and effective treatment has been a challenge for her care team here in Nebraska.

Without knowing how to best treat her, more than 7 of her organ systems have now become dysfunctional. Her skin is almost translucent and hypersensitive, causing hives, rashes, and pain. Her brain is foggy constantly, she has memory loss, difficulty concentrating, daily headaches, and trouble with her speech. She gets blurry vision or loses it completely. Her eyes become hot and painful. She has multiple ulcers throughout her esophagus, stomach, and small intestine. Her liver is enlarged, and enzymes are elevated. Her hair falls out in handfuls. She becomes lightheaded and dizzy with even the smallest movements. Her hands and feet are ice cold, purple, and discolored. At times she struggles to catch her breath. She constantly experiences elevated heart rates, palpitations, and presyncope. She still has two atrial tachycardias, av block, and short runs of ventricular tachycardia. It is difficult to tease out what is her actual heart and what is the dysautonomia. her muscles and joints ache and at times it is even difficult for her to walk, brush her hair, shower, or dress herself. The biggest obstacle for her personally is the chronic fatigue.

As you can imagine, this is not the way any 16-year-old wants to live. She has had to give up her dream of playing volleyball. She cannot get a driver's license. Last year she missed 50 days of school but still remains an almost straight A student. She is unable to work, and sadly, she has lost countless friendships.

Why I'm fundraising

When Kaylee was first diagnosed with SVT, and after watching them stop her heart, I promised her that as long as I'm on this earth she will never fight alone. I have to keep my promise to her.

I began to reach out to specialists in other states. A pediatric electrophysiologist from Colorado consulted on her case and his belief was that she has autonomic failure. Her autonomic nervous system, the system that controls the automatic processes in your body, is not working properly. This is often caused by an underlying disease like diabetes or an autoimmune disease. It can also be caused by genetics. We are of mixed ethnicity, which happens to include Ashkenazi Jew. This increases the chance of a genetic component. Due to her current diagnosis of POTS and Inappropriate Sinus Tachycardia, the electrophysiologist recommended we find someone who specialized in autonomic dysfunction to help determine the underlying cause and get her the proper treatment.

There are very few pediatric autonomic specialists in the country and there are none in the state of Nebraska. The specialists that are available have very long waiting lists but I had to try. Mayo Clinic in Rochester MN was the first to accept her. She is scheduled to see 7 different specialists-Cardiology, Pulmonology, Psychology, Gastroenterology, Oncology/Hematology, Ophthalmology, and Rheumatology. They will likely add on Neurology as well. She is scheduled for 16 appointments between January 29th-February 5th. This is our opportunity to get her the treatment she so desperately needs.

The impact of your support

Mayo does not accept our insurance so we will be self-pay. This is where this gofundme comes in. I am a full time clinical mental health counseling graduate student. I don't work due to the level of care Kaylee requires. Her dad works full time to support us and Kaylee's three other siblings, but this need is bigger than what we're able to do on our own. Financial assistance is available after Kaylee has been seen but this will place a heavy financial burden on our family.

Your donation of even $10 would help go towards more immediate needs related to her trip such as airfare for Kaylee and I, lodging for 9 nights, and food and ubers while we are there. It will also help pay for her medical care and diagnostics at Mayo. Through the generosity of a group of local women we believe we have the required $5,000 deposit that is necessary before Kaylee can be seen and your generosity can help Kaylee get there and alleviate the additional burden and anxiety of travel, food, lodging, and additional needed care.

This is an estimate of the breakdown:

Your donation will allow Kaylee the chance to receive accurate diagnoses, a treatment plan individualized for her needs, and a chance to lead a normal life. Kaylee dreams of attending college on the coast to major in biology. Most importantly, it will help bring the light back into Kaylee's eyes and allow her to live a long and fulfilling life.

There is no cure for autonomic failure/dysfunction/dysautonomia. The suicide rate among those with this condition is terrifying. No person should have to live their life like this, but especially not a child. Kaylee hangs onto the hope that "once this is all over she will finally be free". Kaylee has never got to experience the life of a carefree teenager. Will you help ignite Kaylee's light?

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Thank you for being a part of Kaylee's fight against Dysautonomia!