The Shepard Family
After bringing their second child, Louis, home from hospital, Emily and David knew something wasn’t quite right.
After bringing their second child, Louis, home from hospital, Emily and David knew something wasn’t quite right. His loud, two-year-old sister was running around their home, making all the noise toddlers do, but Louis did not react to any of the sound. Emily decided to take Louis for a hearing test, where the audiologist confirmed that Louis was profoundly deaf. Despite feeling enormous shock and grief regarding the diagnosis, Emily’s internet research and experiences with early intervention services led her to feeling positive about Louis’ future.
“Don’t spend so much time worrying about your baby that you miss out on all the good bits… it’s easier said than done I know but I would say, just enjoy it. It’s going to be okay.”
However, Louis was not meeting his gross motor milestones, and Emily again felt that there was something more going on. After suggesting a diagnosis of Usher syndrome to her ophthalmologist, only to be dismissed, the family went through genetic testing which confirmed that Louis has Usher syndrome Type 1.
Emily and David left the appointment desperate for support or another parent to speak to but found nothing. This feeling of isolation led to Emily co-founding UsherKids Australia to help other parents feel connected and supported.
“It might not be exactly what you envisioned for your child but all of the wonderful things about kids can still happen. They will still have the capacity to go to university and get married and travel the world.”
Now, eight years on, Louis is playing football, cricket and likes rock climbing. Emily says he does everything other ten-year-olds do, just with some clumsiness. He can advocate for his needs at school, something Emily recommends other parents teach their children to do. They speak openly about his diagnosis and there are no secrets.
Emily hopes that other families can find and seek and support. She believes the first week or month after receiving the diagnosis is the hardest and that outside support, such as family counselling or contacting another family, can be hugely beneficial. For those trying to support a family who has just received a diagnosis of Usher syndrome, she recommends providing practical support, like helping with cooking, cleaning or babysitting, while parents runs between appointments. Also, being available to listen to what they are going through can be invaluable. Research the syndrome or ask the parents about what they need or how they can be supported.
“Life is here now and it can be really, really lovely and fulfilling whatever happens, so we count our blessings.”
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