Ava's Story


Our beautiful daughter Ava was born on 1st August 2006. Although born a little early, she was healthy, happy and thrived.

In Mid 2008 we moved to Germany and Ava continued to do well, joining Kindergarten and then Pre-school were she made friends easily and was learning well.

However in mid 2009 we noticed changes in Ava, her development slowed. Her speech became less clear, she no longer answered when called, her vision seemed to be less focused and she began to fall frequently. Ava, as you can imagine, became frustrated and upset by the changes happening to her.

In November 2009 Ava was rushed to hospital with a suspected brain tumour - a Neuroblastoma. This was to be the beginning of a long quest to get a correct diagnosis for our little angel, and only in March 2012 did we get the answer ; Brown-Vialetto-Van-Laere syndrome.

Sadly now Ava suffers from multiple disabilities. Despite using two digital hearing aids, she is profoundly deaf and cut off from the hearing world, she is visually impaired having both Optic Atrophy and Nystagmus. She cannot stand or walk without assistance and relies on a wheelchair outside of the home and mobility aids within. She has lost her upper arm strength, so is unable to feed herself. This also makes it very difficult to co-ordinate her arms or to draw and play.

However, Ava is a tenacious young lady, and astounds us daily with her attitude to her disabilities. We really are very proud of her and will do everything we can to give her the quality of life she deserves.


Read the latest update here