Helping Alexander make the most of each day

30 Nov 1999

When first-time mum Jennifer was 35 weeks pregnant, she received the news no parent wants at a routine scan. Her baby was measuring small, the size of a 28-week-old.

“The consultant who came to speak with me said there was something very wrong,” she recalls.

Soon after, Alexander was born via emergency caesarean.

“He was tiny, weighing in at 1.6kg and he did not cry. I was warned ‘He most likely won’t survive long’.”

Scans showed Alexander had a brain malformation. He got transferred to The Children’s Hospital at Westmead and stayed for five-and-a-half months of life-saving care.

“I was completely blindsided,” says Jennifer. “It was a massive shock, like stepping onto a street and getting hit by a semi-trailer.”

Later, Alexander was diagnosed with Joubert Syndrome, a rare and incurable disorder. He lives with low vision and hearing loss. He has global developmental delays and cannot walk or talk. All of Alexander’s food is delivered through a PEG tube into his stomach. He also has life-threatening sleep apnoea.

Sydney Sick Kids Appeal

For devoted mum Jennifer, one of the hardest parts of being a parent to Alexander is the uncertainty: she doesn’t know how long they have together, as his condition is life-limiting. That’s why, on one of Alexander’s many hospital stays, she made him a pledge.

I promised I’d show him the world,” she says. “The things that are worth sticking around for, all the beauty and joy out there to be experienced.

Now, every day, Jennifer takes opportunities to help Alexander live his best life. It can be simple things, like a bicycle ride, a play date with friends or a community garden visit. Alexander has also recently started going to school and loves listening to music with the support of a hearing aid.

But Alexander also adventures much further afield. Jennifer has taken him to Mexico, the Grand Canyon in the US, and on several camping trips around Australia. Their next trip is to Northeast Arnhem Land. “We’ve had some beautiful moments together,” says Jennifer.

Sydney Sick Kids Appeal

None of this would be possible without caring people like you. Your generous donations help fund paediatric medical equipment, that sick kids like Alexander need to survive and thrive wherever they are.

This includes the BiPAP machine Alexander relies on to sleep safely. Because of his sleep apnoea, Alexander can stop breathing up to 50 times in an hour, putting his life at risk. Unsettled sleep can also leave him tired and irritable. BiPAP machines, that donors like you help fund, use pressure to push air into the lungs through a mask. They can improve sleep quality, reduce hospital admissions, and even save the lives of sick kids like Alexander.

With a BiPAP machine and portable battery packed in their luggage, Jennifer is overjoyed she has been able to show Alexander the world. It brings her confidence to know he can breathe easy anywhere, anytime.

“When you give someone the ability to breathe, you are giving them life in the most fundamental way,” says Jennifer. “The BiPAP machine gives Alexander freedom to sleep at home safely and to travel with me. It means he can truly participate in his family and community life.”

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