The couple behind Welwyn Garden City-based charity Carers Worldwide are sharing their story for World Down Syndrome Day.
Carers Worldwide founder Anil Patil was inspired to set up the charity after he and his wife Ruth became parents to Maya, who has Down Syndrome.
Anil and Ruth worked together in India, with Anil working in mental health and Ruth in children's speech and language therapy.
Through their work they met many unpaid carers, then founded the charity in 2012 after becoming carers themselves.
Anil said: "Having Maya made us realise the importance of the role of unpaid carers and gave us a new perspective about what they go through having a child with a disability.
"One thing with Maya is her resilience. She never says no to anything - whatever is suggested to her she gives it a go and to some extent, that motivated us to create Carers Worldwide.
"We wanted to use our experience to support other carers who don’t have the same support that we received."
The theme for this year's World Down Syndrome Day, which takes place on March 21, is 'end the stereotypes' - and Ruth and Anil want to challenge assumptions about their daughter.
Ruth said: "All too often it's assumed that 'she can't go to a mainstream school' or 'no, she won't be able to do gymnastics' or 'she won't be able to get a job', so at every stage of the journey you encounter a new set of stereotypes and misconceptions that you have to chip away at.
Anil added: "I wish we’d known how to fight more for services and treatments for Maya – how to advocate for her and what she needed."
READ MORE
- Volunteers create new sensory garden at Welwyn Garden City station
- Welwyn Garden City Photographic Society showcases high-scoring competition entries
Ruth and Anil also want to remind parents of disabled children that they are not alone.
"Remember that they’re a child first and the Down Syndrome comes second," Ruth said. "So, enjoy them, hug them and try to get connected with other parents that you can get advice from and share your worries with.
"Find your tribe that are going to support you in the years to come."
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here