Amaria has CDKL5, a rare genetic disorder that causes severe epilepsy and developmental delays. We need help funding her intensive therapy.
Canterbury
Update-
Amaria is now 3.5yrs old and we are heading back over to the Timmermans Clinic in Adelaide for a 3 week intensive therapy course designed to strengthen Amaria and give her a boost to get to the next step (hopefully moving!!)
Story posted last year-
Our baby girl, Amaria, has CDKL5, a rare genetic disorder that effects about 2000 people worldwide. She 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 two and a half years old and is still unable to get herself into the sitting position, crawl, walk, eat food that's not pureed, feed herself, speak, grasp toys and intentionally engage with people or toys for longer than a few seconds. Developmentally she is more like a 5-6 month old.
In March 2017 year we took Amaria to the Timmermans Clinic in Adelaide to develop an intensive home based programme. She has responded well with this therapy and we need help with funding to go to Auckland for an intensive three week course with the Timmermans Method therapist coming over in March (2018).
Amaria is such an amazing wee girl and very inspirational. She is always happy and smiling and has the cutest giggle. She has two 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 our ability to do more as a family, will depend on her getting the right therapy and we believe the intensive programme is the only thing that will achieve any significant results. Her delays are so severe and her disorder is so rare, that we need to do more than what is available in New Zealand through the public health system.
Amaria needs this therapy and there is no way we can fund it on our own.
We thank you in advance for all your support,
James and Steph
We have set up this page to help our wee girl reach her full potential.
The funds donated will go towards the cost of the Timmermans Clinic course fees, flights, accommodation and equipment needed to continue the programme at home.
Amaria’s achievements! 28 April 2019
Hi everyone, thank you so much for your support. We have just come home from completing Amaria’s three week intensive in Adelaide and she was amazing! She got so much stronger and learnt some new skills, such as lifting her foot up to step out of a box. Progress for Amaria will always be slow, but we are determined and are now fundraising for her next three week intensive in September. Let’s get Amaria moving!!
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