The Worthy Children Foundation was created following the diagnosis of a rare and fatal neurodegenerative disease of 6-year-old Hugo in May of 2021. The son of our Chairman, Vikram Sehgal, little Hugo was found to have inherited a slowly progressing version of Sanfilippo Syndrome, a fatal neurodegenerative disease. For years however, Hugo was only thought to have a global development delay.
There is no cure at present and tragically, children suffering from Sanfilippo Syndrome do not usually make it past their teens. Currently, Hugo is excluded from all major clinical trials globally because he has a slowly progressing version of this disease.
In the absence of a cure, Hugo will eventually lose all the motor skills and cognitive abilities he has gained in his short life and is unlikely to live past his teens.
Should he make it to adulthood, Hugo's cognitive abilities will decline with every year that passes. Hugo will continue to unlearn all his abilities until gradually entering a vegetative state before passing away; potentially living up to a few decades in such a miserable state.
To slow this neurodegenerative disease and to allow the maximum amount of time for medical science to catch up, Hugo's parents were advised that he should be cognitively stimulated as much and as frequently as possible, ideally within mainstream environments for developing neurotypical behaviors and social opportunities.
Unfortunately, the school Hugo has been attending is no longer willing or able to support him with his educational needs. Like a number of other children with increased or special needs, he was referred to a specialized institution that caters to those with varying levels of disabilities. Although these institutions can adequately support severely disabled children, the level of cognitive stimulation provided or learning expectations would not allow Hugo, or others in a similar position, to reach their full potential at such a crucial time in their lives.
The idea of Worthy Children Foundation was therefore born to ensure that Hugo and others like him, whether terminally ill or with learning delays, obtain the level of attention, stimulation and education they deserve, supporting their full development potential with as much of interaction with mainstream children.
Contact for parents, caregivers or medical professionals
If you have or are a following a child diagnosed with neurological diseases or a global development delay, in particular learning delays, please contact us to discuss whether and how we can support you.