Matters of the heart

By Hannah Norton

Waikaraka seven-year-old Harvey Ellis was born with multiple heart defects, including seven holes in his heart.

It was one of the side effects of his rare genetic condition - Cri du Chat syndrome - also known as chromosome 5p deletion syndrome, which is a form of intellectual disability.

His mother Jo Ellis says while his heart defect is not life-threatening, it needs to be monitored once a year in case it becomes a danger.

August is @Heart Awareness Month and @Heart is a national charity that has been providing support - both practical and emotional - to children with heart conditions and their families since 1984, including the Ellis family.

Harvey was born in Thailand, but he and Ms Ellis returned to New Zealand when he was 14 months old. "Whangarei is my hometown and this is where my support is," Ms Ellis said.

"I hadn't lived here for many years, so it was important to set up our new life and search for organisations that were able to provide the information and support my son needed for his many needs."

"Luckily I found @Heart and they have been in our lives since," she said.

Recently, @Heart provided her with a one-on-one CPR course. "The best thing was how they were able to tailor it," she said.

"With Cri du Chat he chokes all the time, so they showed how to dislodge food. The lady that helped had done study in intellectual disability, particularly relating to Cri du Chat, so that was good.

"They [@Heart] have provided me with information, fun get-togethers and the knowledge that they will be there for any heart-related matters," Ms Ellis said.

"And I know that there is an organisation that, if Harvey needs heart surgery, they are there and can also put us in touch with other parents who have been there - that's a comfort in itself."

She is thankful that Harvey's heart defects were discovered from birth. "If we didn't pick up on it when he was a baby, we wouldn't know now," she said.

This means vital precautions can be taken prior to things such as dental surgery or operations, she said.

"Knowing that he has a heart condition is being armed from the start."

"I've heard stories about people who hadn't picked up on their heart defects and had something happen later in life."

Twelve babies a week are born in New Zealand with a congenital heart defect and @Heart is the only organisation that supports children born with a heart defect or who acquire a heart condition through illness in the early years of their lives. The organisation is separate to the Heart Foundation and receives no government funding.

The national street appeal is to be held tomorrow. Donations can also be made at any branch of ASB Bank; or donate online via @Heart's donation website, or by texting HEART to 2427 for a $3 donation.

- Northern Advocate

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