Fight for Amaria
I want to do what I can to help my friend's little girl, who is affected by an extremely rare genetic disorder, walk.Canterbury
Amaria has CDKL5, a rare genetic disorder that causes severe epilepsy and developmental delays. Her and her family need help funding her intensive therapy. The next one is in September and has for a goal to try and get Amaria to take her first steps on her own!
CDKL5 affects about 2000 people worldwide. Amaria suffers from uncontrollable seizures and infantile spasms, is severely delayed in her development, has low muscle tone and cortical visual impairment - where the brain and eyes don't communicate properly.
Amaria is such an amazing wee girl and very inspirational. She is always happy and smiling and has the cutest giggle. She has 2 older sisters who love her dearly and always rush to her side when she is having a seizure. Amaria loves swimming, grocery shopping and music. Her quality of life, and the Emery's ability to do more as a family, will depend on her getting the right therapy, and they believe the intensive therapy programme Amaria is on is the only thing that will achieve any significant results. Her delays are so severe and her disorder is so rare that they need to do more than what is available in New Zealand through the public health system, and Amaria goes on therapy to Australia.
Amaria is now 4 and is getting closer to walking every day! The team from the Timmermans Clinic in Adelaide are coming over in September to do a 3-weeks intensive therapy programme aimed at strengthening Amaria and giving her the boost she needs to take her first steps independently.
Chloe Sabbadin's involvement (page creator)
I have been lucky to be introduced to Stephanie and her beautiful family through mutual friends. Stephanie is a wonderful woman and her, her husband and their whole whanau is working tirelessly to help Amaria go further in life. Anything helps!
Use of funds
The funds donated will go towards the cost of therapy from the Timmermans Clinic and equipment Amaria needs to continue the programme at home.
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This page was created on 17 Jul 2019 and closed on 19 Oct 2019.