Meet Rylynn

On March 3, 2008, Rylynn suffered as grand mal seizure while riding in the back seat of the car. It was a terrifying experience!!! Not being able to get to her right away, made me feel like a horrible mother!! I dialed 911 immediately, and pulled in to a grocery store parking lot.

Her seizure lasted only 2 minutes, but it seemed like a lifetime! Once the paramedics got there (in less than 5 minutes) they tried asking Rylynn questions; "Whats your name?" "How old are you?" My little girl wouldn't answer. She just sat there in her seat, staring, unsure of what was going on.

Rylynn was taken to the hospital where they did an EKG, a CAT scan, blood work, and kept her under observation. All of the tests came back "Normal." We were sent home. I was mortified!! My little girl had just suffered a seizure and there was no explanation why. I was up that whole night, afraid she might have another seizure.

A few days later, Rylynn had an EEG, followed by an MRI. My precious little girl was so brave!! Rylynn's results came back from the EEG and it hit me like a ton of bricks. The neurologist told me Rylynn had really over active brain activity, and that it was epileptic activity. The actual diagnosis, Idiopathic Epilepsy. He told me that this probably wasn't the first seizure Rylynn had had, but possibly the only one I had witnessed.

Rylynn started taking a medication her pediatrician prescribed until we were able to get an actual appointment with the neurologist. When we went to our first appointment with Dr. Ross, I remember leaving still so unsure, helpless. I had so many questions, just completely oblivious on how to ask them. Dr. Ross decided to take Rylynn off the medication and start her on another, Trileptal. Rylynn seemed to do great on the medication, until she hit a growth spurt a few months later. She began to have seizures, only we had no idea she was having them. Rylynn suffers from what they call Absence seizures, it's kind of like she's day dreaming, or in a deep sleep while she is "awake."

Dr. Ross suggested we do a sleep study to see if the seizures were occurring in her sleep. The sleep study gave a lot of insight as to how Rylynn was while she slept. She had always been an active little girl, what I didn't know was she was just as active in her sleep! Dr. Litwan, who is a colleague of Dr, Ross, performed the sleep study. It was determined that Rylynn also had a sleep disorder, her brain was unable to wind down, it was over active even in sleep. So, we decided it best to put her on a second epilepsy medication, one she would take at night before bed to help her sleep and her sleep not be interrupted.

Rylynn did really well over the coarse of 6 months, no seizure activity! This came as somewhat of a relief to me! I could actually sleep, I was still paranoid, but I was finally able to sleep. Then, the seizure activity increased. So, we increased her medications. It got to the point where Rylynn couldn't even function!! She couldn't be a kid, she couldn't go to school, she didn't want to play. The medication was keeping her from having seizures, but it was taking away her ability to be a kid. We tried decreasing, and she would have the seizures. During March and April of this year Rylynn missed 26 days of pre-school. I was heart broken, I felt completely helpless. Because Rylynn wasn't functioning on this medication, I made an appointment with Dr. Litwan to discuss a change. Dr. Litwan decided it better for Rylynn that we switch to Topomax. Knock on wood, Rylynn has only had 1 seizure, that I know of, since switching her medication.

Rylynn's epilepsy diagnosis hit me pretty hard. During that short period of time, she was also diagnosed with a sensory processing disorder, as well as hypothyroidism. It was really too much all at once. I didn't sleep, I ate to help "stop" worrying. I needed help, so I could be strong for her! I was depressed, and it was severe. I began treatment with a psychologist, and began taking medicine to help. I was completely overwhelmed!!!

I don't remember exactly how my search started for a seizure dog. I started looking in to the possibility of finding Rylynn a better way of life. I spent a lot of time on the internet. I emailed 3 non-profit organizations, telling Rylynn's story. They all pretty much said the same thing, Rylynn was too young for a service animal. I became discouraged, what was I going to do?? One evening I was watching 7News and they had a story on about a young woman with epilepsy and her parents struggle to better her way of life. They too had tried to get her a service animal, but they too were told she was too young. So, they decided to train their own dog.

I got on the news website the next morning and looked for the story. On there they had a link to Noelle's Angel Dogs. I filled out an application, and contacted them for help. Tina contacted me just a day later and told me that they would help Rylynn get a dog!! I was so overcome with joy and emotion!! Finally, an answer to my prayers. I had been trying to set up fund raisers, get my family involved, when Tina sent me an email telling me about The Chelsea Hutchison Foundation and how they may be able to help with the deposit.

A week or so later, Julie contacted me via email and said they would like to help. Julie told me about the walk they had coming up on Sept 26. I think from that point on I spoke with Julie a couple times a week. Then it became daily just before the walk. She has helped my family so much!! The morning of the walk it was great to finally meet her. Rylynn was drawn to her! They had never met until that day and Rylynn adopted her into our family. Lot's of hugs were shared, and Rylynn even told Julie she loved her! It just melted my heart!!!! Julie thinks, and I agree, that Chelsea hand picked Rylynn and brought us all together!!!! My family is truly blessed!!!! To be surrounded by such beautiful and kind hearted people, it's absolutely amazing!!!! The overwhelming generosity of strangers, so willing to open up their hearts to help a little girl they have never met!!!!!!!!! I get so emotional, but I am extremely grateful!!!! Rylynn is a very happy, loving, special little girl!!!! I thank God for her every day!! Although she faces many challenges, she has an unbelievable spirit!!!!


Veronica


A NOTE FROM KAITLIN TO RYLYNN:  Enjoy your birthday party, Rylynn.  Make sure your mom takes LOTS of pictures so we can see your special day.  I'll make sure I post pictures of my party today too!  LOVE your new puppy, Daisy!  She is super cute, just like you!!!