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Isaac’s CHARGE syndrome

Photo: Isaac's story

For parents Gareth and Kelly, every day is a surprise with 16 month old Isaac who has CHARGE syndrome. As they’ve discovered more about the condition, they’ve learnt to take each day as it comes and are incredibly proud of their son.

CHARGE syndrome is a rare and complex condition affecting one in every 10-15,000 people. Its exact symptoms differ from person to person, but CHARGE often involves extensive medical and physical difficulties, including problems with the ears, eyes, heart, nasal passages, genitals, and growth and development.

Most people with CHARGE have a hearing loss, vision loss and balance problems, which delay their development and communication.

“CHARGE affects each person who has it differently. For Isaac, CHARGE brings a moderate/severe hearing loss and he struggles with low frequency sounds in particular.

"He also has a poor sense of balance, problems with feeding and breathing, low muscle tone, and an impaired sense of touch,” dad Gareth reports.

“Isaac has always found mobility and coordination very difficult because of his lack of balance and touch sensation. So hearing loss is just one factor that affects Isaac’s perception of the world around him.”

"It's been difficult to get the professionals working together."

“We’ve spent a long time finding out as much as we can,” says Gareth. "Because CHARGE is rare, lots of professionals don’t know much about it. They’re experts in their individual areas, but it’s been difficult for us to get professionals working together. 

"For example, Isaac wore a helmet for several months to work on his head shape. The orthotics specialist told us he should wear this all the time, while his audiologist told us that he also needed to wear his BAHA (bone-anchored hearing aid) full-time too. We pointed out that the two things don’t work together and that a solution was needed for Isaac.

"As a parent of a child with multiple complex needs, you take on a big role in coordinating the services they receive.

“The big things for us to concentrate on now are Isaac’s mobility and communication. As he’s getting older the impact of his sensory losses is becoming more obvious. And he gets frustrated that he can’t do the things that other children can. He wants to – we see the determination in his eyes.

"At 13 months he sat up unaided for the first time, which was a huge achievement. Because his gross mobility is delayed, he’s become really good with his fingers and hands. And he loves signing!

"We started BSL signing with Isaac as soon as we found out about his hearing loss. We’re working on developing his speech as well, and the combination seems to work for him.”

"Meeting and contacting other CHARGE families has been essential."

“A barrier for us has been the lack of services or support groups for children with additional needs in our area. We felt quite alone,” Kelly recalls.

“Going to baby groups was difficult because Isaac was behind all the other children. I had to separate myself a bit because I couldn’t join in the conversations about milestones and play ideas. Meeting and contacting other CHARGE families has been essential.

"Even though CHARGE is rare, the community is very active both online and through meet-ups. We’ve really found value in organisations like the National Deaf Children’s Society and our local deaf children’s group.

“When you have a child with additional needs, you have to surrender your expectations to some extent. You don’t want to underestimate your child, but nevertheless you can’t assume that things are going to happen."

"Every day Isaac does new things that amaze us, however small they are. It’s been a difficult journey, but a positive one because we realise what’s important,” Gareth concludes.

“I feel from the bottom of my heart that he’s given me a fresh perspective on life,” Kelly adds. “He’s taught me so much – the way he sees the world, his determination and happiness encourage me to see things differently.”