Being a Parent

Anger, grief, guilt.

These are the first emotions that hit parents when their child is diagnosed with a rare disease.

After the fear and denial, however, comes a sense of relief that the wait is over, and you have some answers. But the hardest part is yet to come – the realization that life will never be the same again. At this point, parents feel more scared and isolated than ever. The lack of support, of useful and accurate information worsens their mental and emotional state even more and practically makes it impossible for them to adapt to the diagnosis.

Information overload with inaccurate data exacerbates chronic grief and anxiety, so reliable and accurate information is key for parents of children with rare diseases. Support during those crucial moments lays the foundation for understanding and acceptance, for learning and preparation, for security and coping. Only then are parents able to overcome stressful situations, manage family life once again and make plans for the future.

When they get answers to all their questions, when they know how to talk to the child about the illness, how not to leave siblings in isolation and how to meet all their emotional needs, parents already feel a sense of security and normalcy:

My name is Elena Cholakova, 45 years old. I am a sales representative by profession. In 2020, my daughter Antonia was diagnosed with a rare type of epilepsy - STXBP1. When she was diagnosed, the first thing I thought was that this was a sentence, and a pretty heavy one at that. I feared that we would be unable to cope with the responsibility and I felt that I needed help, guidance and support. The Bulgarian Huntington Association helped me with information and counseling and included us in their psychosocial support program - this gave me some peace of mind, confidence and guidance on how I can cope and help my child as well. Today I appeal to you to help create a Family Support Center, because hundreds of thousands more people with rare diseases in Bulgaria need to receive support, help and reassurance that they are not alone and together we can be very useful.