The Aurora Borealis is a spectacular natural phenomenon that once seen, is never forgotten.
Our Aurora is just the same, she has a real sparkle for life and is loved by all who meet her. She is our beautiful two year old daughter who has recently been diagnosed with Rett Syndrome.
This page is to raise awareness of this heart breaking disorder, and to raise funds to help Aurora live a comfortable and happy life... to keep Aurora's Sparkle.
About Rett Syndrome
Rett Syndrome is a rare neurological disorder that affects 1 in 10,000 children and in most cases just girls.
After the birth of a seemingly healthy child and normal development, somewhere between the age of 6-18 months the girls begin to regress and thus loose skills they had gained. Rett Syndrome affects nearly every aspect of their lives; taking away their ability to walk, talk and use their hands. Many girls have problems with breathing and eating. Many have seizures, sleep disturbances and curvature of the spine (scoliosis).
Research has shown that girls with Rett do not have brain damage. They know and understand much more than their bodies allow them to show - but they are locked in, trapped by a body that cannot obey signals from their brain.
This so hard to even imagine and terribly frustrating for a child. We’ve all heard of the terrible 2's… Well we are living the terrible Rett 2's!!
With the help of you all and the money we raise we would like to buy Aurora her very own
Given the right equipment, the girls have already proven that they can communicate and 'talk' to us using their eyes (how awesome is that!) The Tobii eye gaze will give Aurora a voice.
She may also need equipment to support/aid and prolong her independent mobility. And to make day to day living manageable and comfortable. When the time comes we hope we can buy these items for her.
Devastatingly, there is no cure for Rett at this moment in time. Researchers are trying their best and making hope for us all. Our aim is to raise awareness and additional funds for
who sponsor the development of new clinical trials.
We are currently planning exciting fundraising ideas, so watch this space! If you would like to join in please let us know.
Thank you all so much for taking the time to read our story. We hope you share and spread awareness of this condition. Knowledge is power!
We are truly grateful to you all.
Love Alanna, Aidan and Aurora xxx
- Jamie Bloor
- Piotr Blum
- Pat John and Friends Adam s Aunt and Uncle in Australia
- Ali Forster
- Michael Workman
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