Good evening to you all,How is Chiane? Her gut has healed and she is eating like a racing horse on steroids. She gained 0.5kg in 2 days. We are repairing her body and we are getting her ready to fly abroad. Within 10 weeks we should be ready to fly.
We have made the decision not to proceed with the Burzynski clinic. We felt as parents that there are better institutions to deal with the Le-Framine syndrome we are currently faced with.
What now? We are currently looking into 3 different institutions worldwide also doing gene therapy and we are establishing which one is the best for both Estian and Chiane.
The funds collected so far will still only be used for the gene targeted therapy, but instead of only one child, we have 2 children now that require treatment. We only have one shot to get this right. We are confident what we need to do, but we are just ironing out a few details before we move forward.
Thank you for your support and please help and continue with the fund raising. We will need every penny to do this.