Eva's Story
Eva – she is one of a kind
There is no one else in the world quite like four-year-old Eva Pym. Two weeks after Eva’s birth, genetic testing indicated she has a rare chromosomal deletion disorder; she is the only known child in the world with this particular deletion.
The chromosomal disorder means Eva has severe movement and mobility delays and development and language delays
The long-term prognosis is uncertain, as it will take several years to establish a clear understanding of her developmental strengths and weaknesses.
Eva, however, has already conquered her mobility problem, thanks to a $1,000 donation from Variety – the Children’s Charity NSW that paid for therapy sessions.
Eva’s mother, Katherine Pym, said, “The funding Variety provided was used for Eva’s weekly occupational therapy sessions. Prior to starting the sessions Eva walked with the assistance of a walking frame. But within three weeks of the therapy she was able to walk unassisted.”
“It was unbelievable, I was absolutely gobsmacked. It was a major focus for us to have her walking but I didn’t expect to see so much progress for at least a year.”
To help Eva’s progress continue, ongoing therapy and medical assistance is required.
Her hectic weekly schedule includes attending occupational and speech therapy to help improve her independence and develop her communication skills plus appointments with a heart specialist, paediatrician, endocrinologist, neurologist and others to monitor her numerous medical conditions.
As Eva’s condition is unique the family is unable to meet government funding criteria for support that typically would be provided to other children with similar conditions.
Her mother Katherine went on to say, “I was amazed at the generosity of Variety. It has given me faith in humanity, it was very humbling.”
Katherine describes Eva as “a very happy girl who lights up a room and loves her music and dance”.
I think Variety is an amazing charity group.
“She is obsessed with music and loves MTV and the Top 40 Chart, Taylor Swift is a favourite and she is also a big fan of Hi-5.”
Eva has a younger brother Lachlan who Katherine says plays a big role in Eva’s skill development.
“There is a bit of sibling rivalry between them but they are very loving toward one another. Lachlan pushes Eva to keep up with him and this has played a big part in Eva developing her skills.”
Eva’s mother is very thankful for the support Variety provided, and praised the organisation for the vital role it plays in highlighting the needs of children with special needs.
“I think Variety is an amazing charity group. I don’t know many charities that do things for special needs kids and are also very active in raising awareness in the community about the issues facing children with special needs,” she said.