Dear Family and Friends~

It's that time of year again! We are getting ready to "Step Forward to Cure TSC". As most of you know, our beautiful little girl, Kylie, was diagnosed with a rare disease called Tuberous Sclerosis Complex, (TSC), when she was 5 months old. She has faced many challeges in her 5 short years~ she has 26 tubors in her brain, that cause her to have seizures. We also found out last year that she has a tumor in the ventricle of her brain, that could have catastrophic effects on our sweetie,  which we closely monitor. She has tried and failed 8 seizure medications and is on one currently that can be toxic to her retinas. Yet, it has been her miracle drug. Kylie's development is behind but she has made leaps and bounds this past year. She runs, talks in short sentences, can count, knows her alphabet, is starting to read and loves to draw pictures! We truely believe this is because her seizures are under better control, due to Vigabatrin. This medication recently became FDA approved, partially in thanks to the research dollars raised by walks like this one, throughout the country. Your contribution is helping to make the lives of kids like Kylie so much better and is making researchers so much closer to finding a cure for a disease that shapes every hour, every minute, of every day that Kylie is in our lives. In times that are so tight, we realize the amount, if any, that can be donated may be small, but every dollar matters. And if you can't donate this year, we completley understand. We just ask that you keep us in your prayers on the day of our event. We would love to have you join us on Sunday, May 16th in Como Park of St Paul! Come be a part of "Kylie's Hope", as we raise money and awareness for TSC. From the bottom of our hearts, we thank you for continuing to support us and for continuing to love our little girl.

With much love and appreciation~

Neil, Maria, Kylie, Ava and Sheamus

www.caringbridge.org/mn/kylie

A video Kylie's Grandma made for the TS Alliance~

www.youtube.com/watch