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This fundraiser ended on 03/12/12

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Kiley's Epilepsy Fund is being used to raise money to help with the financial stress of fighting for control of Kiley's seizures.

Kiley was diagnosed with Epilepsy September of 2006, the weekend before her 1st Birthday. In the beginning it was a hard road. We knew from the scans that she had a leison in her brain which was causing her seizures. The doctors first told us it could be a brain tumor which devastated the whole family. Long story short after many prayers we was told it was a lesion/tumor but it was not cancer. Her doctors in Birmingham, AL got control of Kiley's seizures with a medication called Trileptal. We had routine MRI's and EEG's to follow the progress of Kiley's diagnosis. For almost 5 years her seizures were controlled on the same dose of medicine everyday. Since she had remained seizure free her doctors felt she would outgrow her seizures and eventually she would be able to stop taking the medication. The plan was to keep monitoring her progress for another year and maybe start to tapper her medicine down gradually. We was overcome with happiness and relief. Kiley was full of life, she completed 2 years of pre-school, played softball and enjoyed all the things little kids enjoy. Then came July 2011, which was a very emotional month for our family. Kiley's Great Grand-dad passed away on July 19th after a 7 month battle with lung cancer. We lost the man in our family who found good in everything and kept everyone's faith in check. Well, it was also July 19th that Kiley's seizures started up again. For the first time in 5 years we increased her medicine but that did not help. Her seizures became more frequent so we returned to the doctor and had another EEG done to see what had changed. The seizures was still in the same area of the brain but the seizure activity on the EEG was almost constant. They added an additional medication, Clorazepate and continued to increase the Trileptal. Still could not get control of the seizures. She started Kindergarten in August 2011, despite the possiblilty of having a seizure. Now, keep in mind Kiley's seizures consist of staring, eye flutters, and sometimes she will turn to the left and they only last a minute or so. So her seizures could very well go undetected, which is very worrisome. After continueing to have seizures we was referred to the Epilepsy Program here in Birmingham, AL.They also added an additional medication and then began to talk about brain surgery to remove the area of brain where her seizures are taking place. Now, once again our family was devastated, who would have ever thought brain surgery and we had just lost a dear loved one. So I converted my energy from greif into positive energy. I did what every parent does and started looking for the best possible care for my daughter. As I healthcare professional I knew I could find lots of information from the US News and Report. There I found the ranking scores for hospitals and there specialty services. I never would have thought it but come to find out Children's Hospital in Birmingham did not rank so good in the Neurosurgery department. I will not go into specifics but for brain surgery anything below a 100 is not acceptable to me. So I found the Neurosurgery location that ranked #1 and scored a 100/100, which was Children's Hospital Boston. And that is where our journey began. I contacted our insurance provider and found out that they was an in-network provider. After contacting them and mailing all of Kiley's medical records they began studying Kiley's case. They accepted her and in January we made our first trip to Boston. I saw then this was going to get expensive but when it is your child you do what is best for them. After 2 weeks of testing we have confirmed Kiley's seizure location, the cause and that she is a candidate for surgery. Our decision for surgery was based on; Without surgery Kiley's seizures will never be completely controlled and will get worse, even on medication. Having uncontrolled seizures means no driving, academic challenges at school and most likely unable to have children when she gets older. With the surgery there is a 50-70% chance Kiley could be completely seizure free and taking no medication, that is a best case senario. But if not seizure free, her seizures could at least be controlled. Which means she would have the best chance at enjoying everything in life with no draw backs. So although we have a choice, we really don't. We can not hold our daughter back from enjoying life. Now that all the medical test, paperwork and everything is in place we are just waiting on a surgery date. Now is when I began to look into insurance policies, time off work etc. I have a short term disability insurance which I was sure I could use while I was off work. Well, I was wrong. I got the news last week that it only pays if I have surgery not dependents and since I work 7on-7off we do not bank vacation time. I thought I had this all figured out, now I have began to panick. Kiley's surgery has a recovery time of 10-12 weeks, we will be in Boston for 3-4 weeks. So with the added travel expense now I will be off work without pay for 8-12 weeks dependent on how the surgery goes. Unfortunately, we do not qualify for any assistance programs, which is what has lead me to fundraising. However, since our family is very independent this has been a very difficult task to complete. But I must say that with travel expense, unknown medical bills, and our daily living expense living off one income even for a temporary period of time seems near impossible. Any help provided will greatly alleviate this financial stress and allow us to focus all our energy on "getting our baby well." Our family needs much support and prayers to stay strong through this trial.
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