Join me as we raise awareness and funds this June to Move CDKL5 Forward! Every bit helps us in finding a cure, getting better treatments, therapies , medications for a better quality of life for our children who suffer from this dreadful disorder.

Every June is CDKL5 Awareness Month and we are RUNNING FOR RIAN again! This year we are running/walking as many laps as we can on June 16- the day before CDKL5 Awareness Day and the day before our ***BIG FUNDRASIER PARTY FOR RIAN! ***

Our goal this year is to run/walk 200 laps around our circle (which is 800 meters .5 mile) in our neighborhood. SO THAT WILL TOTAL 100 MILES! Anyone can come help and join us on June 16 to help us achieve that goal OR they can choose to run / walk anywhere else! Just let us know how many miles you did! We are doing this close to home so that Rian can join in on the fun and help us finish those laps. And even if you can't help out adding in miles on that Friday- the WHOLE MONTH OF JUNE WE WILL BE ADDING IN MILES TO MOVE CDKL5 FORWARD!

As many of you know, Rian suffers from a rare epileptic genetic disorder called CDKL5 Deficiency disorder. She started having seizures around 3 months of age and we received her diagnosis at 8 months of age. Rian cannot walk, she is non verbal, she has cognitive delay, global developmental delay, she has Cortical Visual Impairment - and although Rian can see, she cannot see like you and me and is considered legally blind. Because of her feeding difficulties she also has a gastric- tube placed in her stomach where she gets her full nutrition from.

Rian developed severe brain inflammation from a anti-seizure med which in result caused permanent brain damage. The area in her brain that is permanently damaged has caused her to have dystonia- which is a form of Parkinson’s and she has also developed Ventricular Tachycardia where she needed a Linq monitor put in next to her heart. This monitor transmits her heart rate to Boston Children’s Hospital to monitor her episodes of tachycardia. We make monthly trips to see her team of specialists at Boston Children’s Hospital .

Rian has had some pretty close calls in her short 4.5 years of life, especially her event last early September where we thought we were losing her. This disorder can take our children away in an instant- it is an awful- heartbreaking thing to watch your child suffer on a day to day basis. We need to find a cure for better treatments, care, and research to better help the quality of life for our children, for OUR RIAN. She is the light of our lives . Please help us fundraise for the INTERNATIONAL FOUNDATION FOR CDKL5 RESEARCH and Rians medical fund and to help us find a cure . Let’s RALLY FOR RIAN!

You can also make a direct donation to Rians Medical Fund below- just copy and paste this link! https://gofund.me/c51b49ea

Either way a portion of our fundraising from this platform will go to the IFCR.

A THOUSAND THANKS

Danielle, FG, Rian and Punk