Lily and Alex's Story

"It is very hard for us to go out like normal families do, so this was such a valuable experience."

09 September 2022

A Much-Needed Holiday

When Lily’s second son Alex was diagnosed with a rare metabolic disease, the MELAS syndrome at the age of one, she was afraid he wouldn’t be able to walk or talk as the diagnosis manifests differently in each child. Fortunately for her and her family, Alex is now five years old and can walk as well as communicate in a simple manner.

Nevertheless, the disease means that day-to-day life for Lily and Alex looks different than Alex’s peers. Since being diagnosed, doctors had to insert a tube in Alex’s stomach to safely allow food, fluids, and medication to enter his system. They also must take his allergy tests everywhere, being allergic to all nuts, seafood, cow’s milk, soy, eggs and more. And Hospital visits are a routine for the family for regular check-ups and tests for Alex’s condition.

It was during one of these visits that Lily saw the advertisement for the Ronald McDonald Batemans Bay Family Retreat and applied online. She was relieved and excited when the application was approved and they were able to go on holiday earlier in 2022, offering Alex, his parents, and his older sibling, crucial and much-needed time together.

“It is very hard for us to go out like normal families do, so this was such a valuable experience – the whole family enjoying the time to relax and get together, away from the everyday concerns, especially for Alex,” says Lily.

“The first second he got into the house, he was so very excited. And it was so near to the beach, the perfect distance for him to walk, and he loved it.”

“He was very proud that he could walk to the beach. If it’s too long, it would get too challenging for him, and we’d have to carry him. But he loved doing the short walk. And his sister held his hand and I just followed them and admired the scene. We went to play at the beach every day while we were there, and it was a private beach so very relaxing.”

Despite having MELAS syndrome for pretty much his entire life, Lily describes Alex as a little boy who is very happy, outgoing, and friendly. He and his family immensely enjoyed the experiences and activities offered during their holiday too, such as the trip to the Mogo Zoo and the Birdland Animal Park.

“My kids loved the zoo and the Birdland. And being able to go out to the restaurants, having the opportunity to have an entire week away from the city and the stress, I can’t express how appreciative I am of the whole experience.”

“I would encourage all families that are in any similar situation really to reach out to the Ronald McDonald House Charities ACT & SE NSW, and enjoy the chance to come together and enjoy a break – one whole week at no cost!”

“And of course, for anyone who supports the charity in doing this work and operating the Retreat, a huge thank you for letting families like mine have this experience of a lifetime,” says Lily.

Lily and Alex family at the Ronald McDonald Family Retreat Batemans Bay NSW
Alex at RMHC Family Retreat Batemans Bay

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All funds will be go towards our Chapter's Programs that support families with children that are seriously ill, injured, need ongoing treatments/medical care, or are born prematurely with complications.

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Ronald McDonald House Charities ACT & South East NSW

PO Box 635, Mawson, ACT 2607, Australia

Phone: (02) 6281 5894