This story is about my daughter Skylar. While other kids her age are devouring ice cream cones, Skylar gets her food through a tube. While others are running and jumping, Skylar cannot walk or even crawl. And though most 5-year-olds talk nonstop, the best Skylar can do is babble and coo. She was diagnosed with epilepsy at three weeks old. For all we know she could have been having them sooner. It started when we just thought she was jumpy, but her quick jerks were becoming more frequent. We took her to the ER and spent about eight hours there before they found her a room. She spent about two weeks here having numerous tests done. They sent her home on phenobarbital. She seemed to be doing okay for about a week and then her seizures started getting bad. We took her back to the ER and she spent another week there. The neurologist came in to talk with us and told us she didn’t know what else to do and was going to have Skylar transferred to another hospital. Skylar spent about two and a half weeks at this other hospital. They ran more tests, did biopsies, and put her on more medication. The neurologist we have there is great. He has always been so honest with us and has never given up on our Skylar. He knows that he gets frustrated because Skylar seizures have been so difficult.
So far we have found nothing to control her seizures. We have tried all the seizure medications available and are now re-trying them. She has also been on ACTH four times. Skylar has anywhere from three to fifteen seizures a day and that doesn’t include all the jerking she does. Skylar is now five years old. On top of having seizures(tonic-clonic, complex partial, and epileptic spasms); Skylar has scoliosis, cerebral palsy, hypotonia, severe visual impairment(they say she is legally blind), strabismus, and severe developmental delays. Skylar is completely dependent on others. She is tube-fed; she can’t sit, walk, crawl, or talk. She does roll around though and that is how she gets around on her own. She also babbles. This has affected the whole family. We have a fifteen yr. old son and three-year-old daughter. We no longer go on vacations and rarely take short trips. We keep pretty isolated. I quit my job when Skylar was six months old. She had just started being tube fed and we didn’t feel comfortable taking her to the sitters she also had all these doctor appointments and I was missing a lot of work. If my husband or I go out it is one or the other. We don’t go out without the kids together because it is so hard getting a babysitter. So my husband and I don’t spend any time alone. My other two kids don’t go out much either. Money is always pretty short and we only have one vehicle.
Stress is always a major factor in our household. We stick together though. No matter how bad it gets and how mad we get at each other, we get through. Depression is also something that you go through, you just can’t let it beat you. I think Skylar’s greatest challenge is fighting these seizures. She has anywhere from three to fifteen a day. She is such a fighter. She just keeps going and fighting. She’s very strong-willed.
The epilepsy foundation is important because we are hoping one day they will find the cure. Skylar has been on all the seizure medicines that we are now retrying and she has been on ACTH four times now. The epilepsy foundation also provides you with a support group that knows what you’re going through. Some people don’t understand and it gets frustrating. You have people who just stare or say stupid things and you have people who are just ignorant. You go through bouts of depression and the whys. There are no answers but you keep asking. If more people read stuff about epilepsy they would have a better knowledge of what it is about.
What inspires me most about Skylar is her will. For as much as she has been through and is still going through she just keeps on smiling. She is the most courageous little girl I know and such a fighter. She is the most remarkable child for everything she goes through. She is the gift god sent to us. He knew Skylar had a broken wing and that we would love her with everything we have and take care of her. Skylar gives so much love; you just look at her and your heart is lost. She is our Angel and Skylar is who I admire the most.
Not everyone finds the right medicine. There are constantly tests being done and they can’t be done without funding. One day they will hopefully find the cure to help the rest of the ones who can’t find a medicine that works right now. The epilepsy foundation provides support and information that helps a lot of people. What if you or someone you loved had epilepsy? You’d want to do anything you could to help. So if you have any extra and would like to donate to something worthwhile, why not? We all thank you for everything you do to try to help find a cure.