BENEFITING: INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH
This is my two year old daughter Aiyana and she has CDKL5 disorder. Aiyana started getting seizures when she was four weeks old. Since then she has been on special ketogenic diet and atleast three anti-epileptic medicines but still we have not been able to control her seizures. After being on nasogastric tube for several months because of her inability to eat sufficient calories on her own, she just went through a surgery to get a gastrostomy tube. Aiyana cannot walk, talk or feed herself.
Aiyana and approximately 600 other kids are battling with CDKL5, a very rare non-hereditary genetic disorder that comes with severe disabilities. Like Aiyana, most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties. Scientists and doctors do not know what causes CDKL5 mutations or the full spectrum of CDKL5 disorders at this time. With continued research and awareness of CDKL5, International Foundation for CDKL5 Research (IFCR) hopes to build a more comprehensive understanding of the spectrum of this disorder, and begin the search for a desperately needed cure. Due to rarity of the disorder, the foundation has not been able to get significant attention from the government or pharmaceutical companies. The foundation is completely funded and managed by the families of CDKL5 kids.
This year, after Aiyana turned two in July, I made a pledge. A pledge to complete five runs before her next birthday with just one goal in my heart and mind- raise awareness for CDKL5 and hopefully raise funds to support the foundation along the way. This may sound insignificant but I hadn't been a runner and the 24th Annual 5k Labor Day Run 2014 hosted by City of Leawood, KS was my first ever run. With the strength and inspiration of my daughter and your support, I know I can accomplish this goal.
Your contribution today will help provide a better tomorrow for my Aiyana and all the kids suffering from CDKL5 disorder. Do something amazing and help us help these kids!! Donations are going directly to IFCR and are tax-deductible. Thank you!!!!!!!!!!
Hope, Love, Cure.
24th Annual Labor Day 5K Run & Walk @ Leawood Park, Leawood, KS -9/1/2014
Asha-Jyothi 6th Annual 5K-9/20/2014
Jared Coones Memorial 5K run/walk - 10/4/2014
Waddell & Reed KC Marathon (5K)- 10/18/2014
Seize the Day 5K (Epilepsy Foundation of MO/KS)- 11/16/2014
Trolley Run 4 mile (CCVI)- 4/6/2015