A future for Ella

My niece, Ella Schefermann is 2.5 years old and lives in South Africa. She spent the first 6 months of her life in hospital due to being 7 weeks premature and then contacting Covid when she was 2 weeks old, and was in and out of hospital for a year after that. We almost lost her at one point and she’s had endless drips, a spinal tap, was sedated for a month, been ventilated, was given a feeding tube into her stomach and had ‘experimental’ drugs tried on her and a multitude of other things to try and keep her alive during this time.

When she came out of hospital she couldn’t talk, walk or eat and we discovered just after her 2nd birthday, after genetic testing that she has an incredibly rare genetic syndrome called Helsmoortel-van der Aa syndrome, or ADNP for short. She is the only one that has been diagnosed in South Africa with it, and there are only about 300 people diagnosed globally with it. Ella will not be able to look after herself, and we are hopeful that she will be able to one day walk and feed herself.

My s...