What next?

When we set up this appeal for Ava, we still did not have a diagnosis and had been told by the doctors that most likely we never would have. They told us that it would only be a matter of time before she succumbed to the various effects and we would lose our precious girl.

At that point we decided to look at the fast moving world of stem cell therapies and entered negotiations with Beike Biotech in China to give Ava an opportunity of life and health. However when we received a diagnosis of BVVL and a possible life sustaining treatment, we were told that the two therapies could not be safely combined. 

Our medical team in Munich needed to monitor Ava and her results as they increased and added in other medicines and, as this was a trial, the data could not be compromised. Thankfully she has responded positively, and we are thankful for our doctors for their skilled handling of this trial.

We have not ruled out stem cell therapy for Ava, in fact we are in regular contact with the team at Beike Biotech and watch the rapid progression of medical knowledge in this field avidly. And, when the time is right, we will take Ava to China with the hope that she will have improvements in her hearing, vision and maybe in other ways too.

However whilst Ava is stable and still under the dedicated care of her doctors here we are happy to bide our time wait for technology to move on. We only have enough money for one set of stem cell treatment and do not wish to squander this wonderful opportunity unwisely. As parents we must give Ava the best shot at a successful treatment.

In the meantime, thanks to the kindness of Ava's friends, family, work colleagues...she has now a specialised scissor lift wheelchair and a wheelchair accessible vehicle to allow her to go out and about and to take part in activities other children take for granted. The expensive daily Ubiquinone which is not funded by the medical insurance is being paid for by the appeal, and she also has a specially adapted iPad with a Proloque 2 Go speech system loaded onto it to give Ava a voice and to help her read.

These are all thanks to everyone who has helped Ava by fundraising, donations and simple kindness and also thanks to our two wonderful Trustees who oversee Ava’s appeal and look out for her and the money raised.

In the future Ava will need different equipment as she grows and her disabilities produce more hurdles to overcome. We hope that the appeal fund will help her to address these challenges and afford her the best opportunities and a chance at a more independent life.