Friday, July 31, 2009

Kylie's Story

We have internet connection but can't connect the camera.

Here is Kylie's story as told by her mom, Maria.

All my life, I wanted to be a mom. I imagined holding a sweet baby in my arms, dressing her up in cute clothes, rocking her to sleep. I imagined going on long walks, watching her at dance recitals, watching her play softball, maybe even play 3rd base, like her mom did. I imagined the shopping trips, getting our nails done together and sharing all of my favorite books with her. I imagined the conversations we would have, answering all of the "Why?" questions, the long talks at night and soothing her broken heart over a boy. Little did I know, it would be my heart that was broken.

Kylie Jo Gibbons arrived on September 20th, 2004, the perfect gift to celebrate her parent's 1 year wedding anniversary. Instantly, I fell in love and knew I would do anything for her. 4 short months later, as I snuggled in bed with my sweet girl, I watched as she had her first seizure. Two weeks later, our lives were forever changed as the words "Tuberous Sclerosis" entered our world. I knew then that our lives would never be the same again.

In the beginning, it looked like Kylie would have a mild case. She did not have any tumors in any of her organs, aside from 2 tiny spots in her brain. She had a few white patches of skin and a tiny white patch of hair. But her seizures were relentless. Thousands and thousands of seizures those first few years, many hospital stays and a trip to Detroit to see if she would be a good surgical candidate. We could not imagine putting our girl through such a horrendous brain surgery to stop her seizures, yet when we found out she wasn't even a candidate for surgery, we were devastated and knew we would never see an end to these seizures. She has been on 10 seizure medications, some which have wrecked havoc on her immune system. By age 2, she had 3 ear surgeries, 3 sinus surgeries, iron infusions, long term IV antibiotics, numerous PICC line insertions and finally a port-a-cath placed, and revised, numerous times. We finally had it permanently removed this past April, when it caused a huge infection in her little body.

We met the Beecher family right after Kylie got diagnosed. Amy was holding this sweet, beautiful little girl, whith shocking white hair, in her arms. I remember how Jess's head kept dropping, over and over again. It broke my heart. Over the next few years, everytime Kylie was in the hosptial, Jess would be right behind, or vice versa. We got to be very good friends with Amy and Jason, as well as their extended family. It was obvious how much they loved their sweet girl and how much they loved ours. The girls loved giving each other "moochies" and even just pulling each others hair. Our hearts were broken when Jess lost her battle to the seizure monster but were filled with love when we heard about "Journey for Jess". What an amaving testimony of a parents love for their child.

Kylie is almost 5 and is still the sunshine in our lives. Although most of her organs still remain free of tumors, we did find out she has 26 tubors in her brain and a giant cell astrocytoma, which is a tumor in the ventricle of her brain. She has MRIs every 6 months to monitor it's growth. If it grows, she would most likely have surgery to remove it. How ironic to have a brain surgery that wouldn't even help to stop her seizures. She still has seizures, although is down to a handful a week, thanks to a medication that is not yet approved by the FDA. It has been life changing for us. The hardest part of this disease in the beginning was the seizures. 5 years later, I would have to say the hardest part now is the delays. Whether it be from all of the seizures she had, from where the tubors are in the brain or just from the disease itself, we will never know. Her speech has been improving every day and she is currently speaking in 4-6 word sentences but we are still waiting for those long conversations. She walked at 26 months and does get to dance and play t-ball, with her special ed friends. We are working at potty training, learning to pedal a bike and dressing herself. She does know her alphabet, is counting and drawing pictures. She receives 6 hours a week of combined PT, OT and Speech therapy. She still sleeps in our room at night, as many of the seizures she does have are at night. Every day is a battle but one Kylie fights with a smile on her face.

My dream is for no other parent to ever hear the words "There is NO cure". Please help make this dream become a reality and donate to "Journey for Jess". Thank you for fighting for our children!

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