We will be waiting for the next CDD family conference held every 2 years in USA.
Reusable masks made by Raffael's grandmother to go towards CDKL5 Research are being sold in store at Heal & Soul Health in Geelong West 3218.
New fundraising streams coming soon!
Written by Carson Troy for his special little brother Tanner. Carson recently celebrated his Bar Mitzvah and we wanted to help spread this book to the other side of the world!
The book is 15 pages of beautiful hand drawn illustrations and Carson has autrographed every single copy!
My son, Raffael, as most of you know, was also born with this terrible condition called CDKL5 Deficiency Disoarder and every day is a celebration of his resilience and strength.
We have 70 copies to sell for the under cost amount of $20AUD with all funds going to CDKL5 research.
This is not a money making venture but something we want to do to spread awareness and also to acknowledge and support the siblings of those kids born with rare conditions.
They sometimes miss out on a lot and have to take a back seat when their brother or sister needs extra care, numerous specialist and therapy appointments and more times than we want to remember, emergency trips to hospital.
Well done Carson and to the Froy family. You always do so much to raise funds and awareness so that one day, a cure may be found!