Hailey’s Full Story

1) Age 3, soon after epilepsy diagnoses
2) Age 3, first day of preschool, soon after epilepsy diagnoses

3) Age 5, most recently in her walker

Hailey was born a beautiful and healthy 7 pound, 5 ounce baby on October 30th, 2002. She was always the best baby. She hardly ever cried and was sleeping through the night within a few months. She was such a happy baby, always smiling and laughing. She was so affectionate too. She would hug and kiss us all the time. We could not have asked for anything more.

At the age of 2, Hailey was developing typically except for a mild speech delay. She was enrolled in speech therapy and did well with that. Months later, Hailey had her first seizure. It lasted nearly an hour and at the time, it was the worst day of our lives. We had never seen a seizure before and it was so scary watching our child go through that. Hailey was in the hospital for several days following that and had every test imaginable done. Everything was normal.

A couple of weeks later, Hailey had another seizure and another days later. She was diagnosed with childhood epilepsy and we were told that she would grow out of it. The doctors started her on seizure medication, which did not help. She would go through one after another without any success. To date, she has failed 8. She did however, suffer from many of the side effects from the medications.

Through the months, we noticed Hailey had stopped progressing. She was having a lot of trouble walking and would trip and fall often. She did not progress with her speech at all. Then, she started having drop attacks. They are a type of seizure that would cause her whole body to completely buckle and she would fall to the ground. Those too were very scary. Then the head-drops started. Another type of seizure that would cause head to either fall forward or backward, very hard. This happened all through-out the day. She had to be fitted for a safety helmet to protect her head from the falls. Soon Hailey completely lost the ability to walk. She began regressing with her speech until it was all gone. She went from 70-80 words to 0. She also lost a lot of her motor skills and had a lot of difficulty using her hands. Hailey now needed much more than speech therapy and was enrolled in occupational therapy and physical therapy.

Most recently Hailey has to be put on a feeding tube. She has lost so much muscle control of her mouth that she is not able to eat enough to keep her alive. We have also had a terrible time with seizure control. Until the addition of a new medicine a few weeks ago, Hailey was having upwards of 500 seizures a day, mostly myoclonics or “drop-attacks.” That went on for nearly 10 months. She still has about 50 a day, which is sadly a great improvement.

Hailey does attend a public preschool program. She loves going to school and really enjoys seeing the other children. She is in a regular class and all of the kids there are so good to her. They play with her and make her laugh. It makes us feel really good that they include her. Hailey has to have her own aid while at school. We love all of her teachers and therapists. They are great with her and they take the time to include her in everything the rest of the children are doing. We feel very comfortable knowing that they really understand Hailey and know how to care for her. They have been so supportive through it all.

Hailey looks perfectly “normal” and people have a hard time understanding why she struggles so much. We get a lot of “what’s wrong with her,” mostly from other children, but sadly some adults too. We have learned to just give the simple answer of “she’s sick.” Along the way we have tried everything in an effort to help her. From all the drugs, to over 20 vitamin supplements. We have tried chiropractors, cranial sacral therapy, foot baths, aromatherapy, diets, even herbs from an Amish doctor. Nothing has helped.

The neurologist had been testing Hailey for genetic diseases for a while, with everything coming back normal. We had always hoped that it would just one day go away. Most recently they did an enzyme assay to test for Battens disease, which we didn’t even know they were testing for. We had a follow-up appointment the next week, when they gave us the devastating news. Hailey has Late Infantile Batten disease. They went through, in detail, everything that we could expect. Our world and everything we ever knew was shattered. They informed us that Hailey is pretty far into the disease. They are surprised that Hailey can still see, as vision loss is usually one of the first signs. Just over the last few months, Hailey has started losing her vision and be expect for her to be completely blind soon. We had learned to deal with a lot of the other issues, but it crushed us to learn that Hailey will not be able to see… and will die.

Upon returning home, now completely different people, we tediously began researching. Only to feel even more hopeless. The only two trials they had to treat Hailey had just ended. We were informed that they would most likely not be able to treat her anyway, as she is too far into the disease. We called everyone, everywhere with everyone telling us the same thing. We felt like we should just give up. It was then that someone with the Batten Research and Support Group told us about stem cells in China. Of course it sounded a little crazy at first, but it was either this or sit back and watch the disease take our daughter from us. He told us how to get in contact with other parents that have gone there. Of course, we immediately started emailing and calling them all. They were so helpful. One of the mothers is actually there now and helped us get in. We sent all of Hailey’s information and received an email the next day saying that she had been approved for treatment. We feel like we have some hope now and something to look forward to.

Now we just have the difficult task of raising the money to get there. The treatment requires three trips at $50,000 each. We know it seems like a lot of money, but that is nothing compared to our daughter’s life. We have to move very quickly though, as time is running out. Hailey has already lost so much, but she still has a lot left to lose. Soon she will not be able to hold her head up at all, or even smile and we think that she is starting to lose her vision. We have to stop this disease in it’s tracks and save our daughter’s life. We just cannot imagine our lives without her.

(Please check our updates pages for Hailey’s current condition)

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