Our Superhero of the Year

311014PBRachel SUPERHERO: Rachel has ability, not a disability. PICTURE: PAUL BROOKS

Rachel Dempsey has a chromosomal disorder called Cri du Chat which has presented the 29-year-old with a personalised set of obstacles and solutions, but she refuses to be defined by her "disability"; it's something she "lives with", not "suffers from".
"Cri du Chat means 'cry of the cat' in English," says Rachel. "When we are born we sound like a high-pitched kitten. I annoyed my mum; I was like the worst baby ever."
Rachel speaks deliberately, slowly and carefully, enunciating each word for maximum understanding. Cri du Chat syndrome is also known as 5p- (5p minus) syndrome, and is a condition that results when a piece of chromosome 5 is missing. It can result in learning difficulties and communication problems, as well as physical symptoms. "If they have the full syndrome they have trouble walking, talking, a mental capacity between two and nine years of age," she says. "I have a rare form of Cri du Chat, which is mosaic. That means some of my cells are affected, but not all of them."
Cri du Chat is one of the most common deletion sydromes, she says. "One in 50,000 babies are born each year with the syndrome."
In the United States there is a Cri du Chat 5p- society to which parents can hook up for information and support. "In New Zealand we have our own website," says Rachel. "There are about 20 families in New Zealand with Cri du Chat."
Rachel was seven when the family arrived in Wanganui. "I went to St John's Hill School for a term then my parents moved me to St George's. I was kept back in Year Two because I need to learn at my own pace."
From there Rachel attended Sacred Heart College which merged with St Augustine's to become the co-ed Cullinane College.
"I met my first Cri du Chat person when I was 15," she says.
Rachel was teased at school. Her speech and way of walking made her a target. "I got bullied," she says simply. "I was different, I was slow. They used the word 'retarded' which I really don't like."
After leaving school she attended Training For You, a large Wanganui tertiary provider, where she obtained her Teacher Aid Certificate. "It took me two years because when I learn something new I like to repeat; that's how I learn. Then I went on a Government programme for disabled people, and went back to my old high school and worked in the Learning Centre for two years until the funding ran out." During that time she was teacher aiding, helping disabled students with correspondence.
Rachel then worked for a friend of her mother, taking care of filing and shredding. She also works part-time at the YMCA in the Boogie Buddies programme and for more than four years she has been putting in a morning a week at the Trade Aid Shop in Victoria Ave.
Straight from home she lived in a group situation, during which she met care-giver Katie Hedgman-Dalton, her future employer at Trade Aid Shop. Rachel calls Katie "Cricket".
A big step was the move to independent living in her own home. She lives there with her cat Fanta. Twice a week, help arrives to assist with shopping and housework. "That's because I have a slight intellectual disability which comes from Cri du Chat," Rachel says.
In July she attended a Cri du Chat conference in San Antonio in the US, where she was able to meet up with friends and make new ones. The theme of the conference was Superhero and she won Superhero of the Year. Last year she was a guest speaker at a conference in Australia.
For fun she reads, collects elephants and she "writes quotes". She has a book in which she writes about her syndrome and what it means to live with Cri du Chat. She calls it Rachel's Book of Words of Wisdom, in which are such gems as "We are not broken so we don't need to be fixed".
Her favourite, and the first entry in her book is as follows:
"I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult; I am a cook and a member of society, a cousin, a volunteer and a light in this world, a fur mama to Fanta. I am all of these things and so much more; I have Cri du Chat Syndrome."