Ty's Story

Tylor was born on September 11, 1996, two days after his due date. He was born with no complications and of a very healthy weight, 8lbs 5oz and 22 1/2 in long. He had blond hair, blue eyes and he was perfect. After arriving home from the hospital Tylor slept pretty much through the whole night, eat well, and was a very happy baby.

As time went on Tylor began to love playing baseball. At 3 years old he hit and caught a ball very well. I remember joking with my friends that I would be able to retire early because Tylor was going to the Majors. I signed him up for a little baseball team in our area and he loved it. No one could believe the skill he had at such a young age. This continued until the summer of 2002, when he was trying out for little league and suddenly forgot how to throw the ball. He just stood there with the ball in his hand in rocking motion. That is when ours lives changed. Tylor's skills continued to decline, his fielding wasn't as quick as it once was and his running seems to be compromised. When Tylor started school the teachers noticed that his participation wasn't the same as the previous year. After doing some testing they discovered that his skill levels were dropping. They suggested I get him tested for ADHD, which I did and he was put on medication. I still didn't believe this was the problem. The medication was only affecting his mood; he was very emotional and was continuing to decline. The doctors decided to have Tylor seen by a neurologist. In the early part of 2004 we ourselves in Davenport hoping to have an MRI done. But all the doctor did was exam him for about 15 minutes and told us there was no problem and he didn't see any need for further testing. Not satisfied I contacted Tylor's doctor in Dubuque asking for him to refer us to Iowa City, he agreed.

When Tylor started being seen at the University of Iowa I noticed he was having episodes of staring off into space and being non responsive. The doctors in Iowa City had me discontinue his ADHD medication and began testing to find out if he was having seizures. After an MRI and many EEGs later they concluded that Tylor was experiencing silent seizures. They started him on anti-seizure medication and explained that this would help control the amount of episodes but may not stop them completely.

As the months went on the seizures began to change, they were more intense and becoming more frequent. After another trip to Iowa City the doctors changed his meds. This seemed to work for awhile but six months later Tylor had his first Grand Mal seizure. So we went back to Iowa City for more testing and med changes. This went on until the end of 2006 when I asked to me referred to the Mayo Clinic in Rochester.

In April of 2007 we loaded up the car and headed to Rochester hoping to find some answers as to why Tylor was still declining. The doctor there wanted to perform all the tests over and have a prolonged EEG done on Tylor. Tylor was admitted to the hospital in June of 2007 for a week to see if they could record some seizure activity. I was bound and determined to get something out of this hospital stay so I kept Tylor up for almost two days, the doctor told me that lack of sleep may trigger a seizure. On Wednesday morning Tylor had a Grand Mal seizure. I remembering thinking to myself, finally now we will have answers and they will get Tylor on the right medication or fix what ever was going on. Boy was I way off, the doctor told me that is was an epileptic seizure but that didn’t answer the question as to why he continued to decline. For the next eight months we found ourselves going to Mayo every month for more tests.

Finally in February of 2008 we met Dr. Marc Patterson. After examining Tylor he ordered skin biopsies to be done and informed us that the test results should be back in about two weeks. After the two weeks passed and no phone call I began calling every week for the next four weeks and still no answers. Than in June I received the horrible news Tylor has Niemann-Pick Type C (NPC) and there is no cure. My heart felt like it was being ripped from my chest, I couldn’t believe what I was hearing. All of my hopes of finding out what was wrong and being able to fix it were thrown out the window.

Since the diagnoses Tylor has declined dramatically, we started him on an experimental drug called Migulstat. The doctor is hoping the Migulstat will slow the progression of the disease. Tylor had surgery on February 24th of 2009 to put in his feeding tube and had a stomach surgery to help prevent acid reflex. As for now he is holding his own and has handled all of the testing and procedures with such grace and strength.