Hello! I'm Csilla, Nelli's mom🙂

My little girl was born with Mowat-Wilson syndrome, a very rare genetic disease (about 500 diagnosed cases in the world), which is not curable, but with the right treatments Nelli's quality of life can be improved.

The main features of the disease in Nelli are:

• Hirschsprung's disease ( intestinal disease)
• Celiac disease
• Congenital spleen deficiency
• Heart disease
• Delayed motor development
• Speech delay

He has already had an operation at 2 weeks old to remove a section of bowel without a bowel ligament and will now have a heart operation in September.

We are currently taking him to 3 places for different sessions ( Neuro hydrotherapy, intensive therapy with a conductor for 1 week a month, physiotherapy 1x a week) these cost nearly 150k per month.

Now we can provide everything for him, but soon I will only get GYES after that and then our situation will be more difficult.

Thank you, if only a little, but you can contribute to Nelli's improvements! ❤️