De ziekte van Norrie

Three days after our son was born, we heard that doctors suspected he had Norrie's disease. This is a very rare disorder that causes blindness, and over time it may also deprive our child of hearing! This is an unimaginable blow to us... 

We immediately started looking for help. We have performed genetic tests to confirm the diagnosis - we will receive the results soon. Our calendar is bursting at the seams with medical visits and consultations. We learned that Czarek's best chance was surgery in the United States. We are waiting for qualifications for the procedure.. 

We must be sure that we have done absolutely everything to help Czarus. We cannot allow our son to be condemned to a life of darkness... Any help is a huge support for us in these difficult times..