PROFILES OF AUSTRALIANS CURRENTLY LIVING WITH CDD.
Raffael
Raffael, or Raffy as we love to call him, is 7.5 years old and doing better than expected or predicted. He was pumping iron at the gym when we met him but pretended he was just looking so we wouldn't know he could be physically capable and make him do more without assistance. Raff has been training an amazing team who learn constantly through his spontaneously unpredictable presentations which keep everyone vigilant. Raff shows us everyday how strong he is as we grow and discover our abilities are so much greater than we ever imagined. Thanks to him, we are able to understand and assist others who approach us and need a unique solution to meet their needs. We love you Raff. ❤️
Who are the children and adults living with CDD
Mila
Introducing Mila a beautiful 4 year old CDD child. No doubt Mila is different than your typical 4 year old yet is very capable in her own way. She definitely exceeds our expectations with her strength and will and when she finds her purpose she creates her way. Like all CDD children she has a big personality and she sure rules our house. Mila’s biggest cup is acknowledgement and takes pride in her successes. She sure keeps life interesting and never boring!
Raffael
Raffael is now 8.5 years old and is doing extemely well despite his condition. The last 3 years have been tough with 2 of them spent mostly in bed as he was unable to breathe properly in the sitting position. A lot of hard work was done to try and find a solution which let to the discovery that this was mostly anxiety related. 4 clues were also noticed that led to a diagnosis of grass allergy. The other major discovery was a link between his breathing and his neurological system which results in battling excess secretions and fluctuating oxygen levels combined with seizure episodes and movement disorder. Currently we have a fairly good balance in between all of these complications. Hopefully we can continue on that path or better and give Raff the best quality of life he deserves.
Eveleigh
Hello! This is Eveleigh, turning 3 very soon! Eveleigh loves her family, especially her older brother who makes her laugh endlessly. Eveleigh also loves the sound of water splashing, so a visit to the ocean is an hysterical outing every time. She also is a fan of anything that makes noise, so rattles and music are wonderful ways to soothe Eveleigh. Dancing around the house with the family is another fun activity, and chasing her big brother is just as good.
Millie
Millie is a beautiful 3 year old who has CDKL5 deficiency disorder. She has been through more in her short life than most of us do in a lifetime. Despite that she is a happy little lady who loves watching her brothers, bath time and most of all, lots of cuddles!
Amaria
Amaria is a strong and happy six year old with CDKL5 Deficiency Disorder. She loves being outside, music, standing up, lights, vibrating toys, swimming, horse riding, going to school and, most of all, her two big sisters!! Amaria is not letting this horrible disorder stop her from living her best life!!
Adeline
Adeline is 14 months old. Nothing about her is typical nor does anything come easy for her. Despite enduring 30 seizures per day, she is a happy girl who enjoys playing with sparkly tinsel. She is currently working really hard on learning how to sit by herself. She loves rolling around on the mat and being pushed in the pram. She hopes for the day when we find a cure for CDKL5 deficiency disorder.
Annabelle
Caydence
Caydence Rewi from Hawkes Bay New Zealand was diagnosed with CDKL5 in 2018, born may 2016. It took 2 and a half years to get a diagnosis, a long unnerving worrying time. A phone call to say There is no Cure, she won't walk or talk a heartbreaking time for her family. But they didn't give up, if anything they fought hard and strong to give Caydence a life full of love and huge opportunities. Long hard hours of intense physical therapies, fundraising endlessly to get tools and equipment to help her reach milestones. She is our little CDKL5 warrior her determination and strength paid off when she took her first independent steps. She is the most gorgeous, sweet loving little girl with a smile that warms your heart. Caydence loves all things music, bright lights and most of all her friends and family. Never give up, you got this, we got this. CDKL5 NZ