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Kaylee's Struggle with Seizures

Organized by: Philip Morris

Philip's Photo
Philip's Photo
Philip's Photo

THE STORY:

Kaylee has always been a really special little girl. When she was about 16 months old she started having "staring spells." We took her to the doctor and he wasn't alarmed and nothing was done. Shortly after her brother was born several months later we started noticing more and more of these and took her in to see another neurologist who did an EEG and wasn't sure what was going on and we should bring her back in 6 months. So we had another EEG done at a different office a few months later and the neurologist told us to, "Make loud unusual noises to break her out of whatever is going on." We were floored. We couldn't believe this guy actually went to medical school. We were getting frustrated with the doctors we were visiting.

We went to yet another neurologist who did an EEG and the same day showed all the spikes of the seizures Kaylee was having. She started on depakote and over the next couple years we went through many different medicines and medicine combinations. Some wouldn't work at all and some would work for a couple weeks. It seemed like the only thing Kaylee would get from the medicine was the negative side effects. Then she would be back to having hundreds of seizures a day. At one point she was on 3 meds and having at least 150 seizures a day. She would emerge from these seizures disoriented, exhausted and would often go right into another seizure. Many times she was so confused that she would cry for 10-20 minutes following the episodes. Because of all the seizures we lost valuable time developmentally and she still struggles with many day to day tasks.

In April of 2010 Kaylee was hospitalized to begin the ketogenic diet which is designed to build up ketones in the brain that act like insulation. This is possibly the most difficult diet in the world because it requires an extensive amount of dedication and time. All food has to be weighed to the gram and the fats, carbohydrates and proteins have to be calculated and supplied at the appropriate ratio and caloric amount. It is a constant juggling act to maintain this tight control on her diet, but it has taken her from over 150 seizures a day and three medications to about 5 seizures and no medication.

We recently transferred her care to Duke Medical Center as we felt we were at a standstill with Kaylee's previous neurologist. We have been very pleased that he has taken us seriously and immediately started some further testing that could possibly get Kaylee seizure free. Even though we have come so very far with the ketogenic diet seizure freedom is ultimately what we are searching for. It's what Kaylee needs to start leading a normal life.

Anything that could be donated to help with the cost of Kaylee's care would be so appreciated. We have drained our savings as well as our retirement. It is a constant struggle to make ends meet while ensuring that she gets the care she deserves and needs. We still have to pay medical debt for multiple MRI's, EEG studies as well as a multitude of blood tests and office visits.

We thank you for your prayers and support as we care for our sweet girl.

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Philip Morris

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