Kay Pullen
Kay and Debs 5K Everyday for May
Fundraising for CDKL5 UK
Story
4 Years ago I completed my first Yeovil Half Marathon in aid of CDKL5 UK but particularly a little girl who suffers from it.
Amber Partridge, is the little sister of my son Adam's close friend Cameron Partridge. Back then Amber had not long learnt to walk she was doing great. Today Amber has just turned 13, is still walking and making great strides in her development. This is despite having CDKL5 Deficiency. CDKL5 Deficiency is a rare genetic condition which randomly happens, meaning it isn't inherited. Amber had her first seizure when she was just 12 weeks old. She wasn't diagnosed with CDKL5 until she was nearly 4 and in that time she had hundreds of thousands drop seizure.
Children with CDKL5 have early onset seizures, most do not walk, almost all do not talk, they have a range of other symptoms such as gastro and respiratory problems and also visual impairment.
Despite Ambers difficulties she remains happy, loves to snuggle, enjoys company of others particularly her brothers and their friends. She has also been and continues to be inspirational taking all her difficulties in her stride. If only everyone had as much strength as this little girl and her fellow CDKL5 sisters and brothers, then the world would be a better place.
For the Month of May my colleague and good friend Deb and I will be running, cycling or doing something for 5K every day. I am doing because she cant (although I am sure she'd give it a good try)
For more information about CDKL5 UK visit their website www.curecdkl5.org, visit their youtube to see some video of Amber and her friends and others who are helping to support CDKL5 families in the UK https://www.youtube.com/channel/UCfmSIUyPxmZrJ3-yrRXxYiA
Dig deep and wish us luck :) #cdkl5champion
Kay & Debxxx
Amber Partridge, is the little sister of my son Adam's close friend Cameron Partridge. Back then Amber had not long learnt to walk she was doing great. Today Amber has just turned 13, is still walking and making great strides in her development. This is despite having CDKL5 Deficiency. CDKL5 Deficiency is a rare genetic condition which randomly happens, meaning it isn't inherited. Amber had her first seizure when she was just 12 weeks old. She wasn't diagnosed with CDKL5 until she was nearly 4 and in that time she had hundreds of thousands drop seizure.
Children with CDKL5 have early onset seizures, most do not walk, almost all do not talk, they have a range of other symptoms such as gastro and respiratory problems and also visual impairment.
Despite Ambers difficulties she remains happy, loves to snuggle, enjoys company of others particularly her brothers and their friends. She has also been and continues to be inspirational taking all her difficulties in her stride. If only everyone had as much strength as this little girl and her fellow CDKL5 sisters and brothers, then the world would be a better place.
For the Month of May my colleague and good friend Deb and I will be running, cycling or doing something for 5K every day. I am doing because she cant (although I am sure she'd give it a good try)
For more information about CDKL5 UK visit their website www.curecdkl5.org, visit their youtube to see some video of Amber and her friends and others who are helping to support CDKL5 families in the UK https://www.youtube.com/channel/UCfmSIUyPxmZrJ3-yrRXxYiA
Dig deep and wish us luck :) #cdkl5champion
Kay & Debxxx