Future for Chris

Hello everyone,

My name is Todor ,me and my wife Elena have a beautiful and long awaited child Hristo.

On 27/09/21 our son which was as normal as any toddler at the time,was diagnosed with Krabbe's disease which is very rear genetic condition,the symptoms usually appear by the age of 6 months and the affected child will not live by the age of 2,as unlucky as Hristo is he was diagnosed at the age of 2 years and 3 month his case is considered as a late-infantile , our world came down as we were told by his Dr's that there is no cure and he will die.

The disease is life threatening. Since it damages a person's central nervous system,complications include:

*blindness

*deafness

*severe loss of muscle tone

*severe mental deterioration

* respiratory failure and death

We have been very fortunate and been offered a Stem cell transplantation which Hristo is having at the moment, the transplantation may stabilise the disease progression and extend the life of the treated person.

However even when the transplantation is considered successful the fight for Hristo won't end there.

The progression will slow down,but it won't stop the neuropathy as the transplantation is not a cure.

There is a possibility for gene therapy in America,treatment used in experimental trials.

As we all know a gene therapy treatment would be quite expensive,we are hoping and praying that after the transplantation we could go to America and have Hristo's evaluation for gene therapy,and that he would qualify and have a better and longer life.

So far we have kept this journey to our self's as it was very hard to process that devastating news.

But we realised that we would need help for  Hristo in his fight with Krabbe's.

Thank you all for your support.

Have a lovely Holidays