The joy of Christmas is something felt by most of us but, when you have a sick child, the time spent with them is extra special.
That’s a feeling Steve and Geri* know all too well.
The couple spent the first 100 nights of their baby’s life in hospital and, while they are home now, the road they are on is not an easy one.
Their 21-month-old daughter Dawn has total intestinal aganglionosis, a condition which makes it virtually impossible for her to digest foods and for which there is no cure.
“Dawn was born at full term, at 39 weeks in Gosford, but, after a day and a half, she was flown to John Hunter Children’s Hospital with a few concerning symptoms and was in NICU for two weeks before she was diagnosed with her condition,” Geri said.
“It means that she needs to be fed intravenously through a central line in her chest – it goes straight into her vein and pumps nutrition around her body through her blood stream.”
The pair describe Dawn as an energetic and happy little girl who loves to dance and smile.
“She is just a joy,” Steve said.
“She is happy and learning and growing really quickly.”
For both Steve and Geri, the frightening time threw their world upside down and they had to embark on a journey that no one could be prepared for.
After realising they needed to find a place to stay nearby the hospital, they were quickly introduced to Ronald McDonald House.
Steve said they could not have made it through the three months without the help of the charity.
“It would have been highly stressful, having to find our own accommodation and it would have added financial stress to it all,” he said.
“The beauty of Ronald McDonald House is that it was right there, really close, it took a lot of the unnecessary stress away and it just made things a little bit easier.
“It is an amazing facility, with some incredible people under the roof of it, like the volunteers.
“The last thing you want to think about is looking after yourself when you have a sick child, so it’s amazing that somewhere like Ronald McDonald House exists.”
Geri added the house was like a sanctuary they could return to after some incredibly difficult days.
It gave them time to focus on Dawn and, as a result, she was able to spend her very first Christmas at home last year.
“It was a really special time for us, and this year is going to be so much fun [too],” Steve said.
“It’s going to be fun this year because Dawn is a bit older and understands the concept of opening presents and celebrations,” Geri added.
The pair are incredibly grateful to the Ronald McDonald House and urge the community to support the #12DaysRMHChristmas campaign.
The initiative aims to raise funds to help the charity continue to provide vital support to the families who need it.
Ronald McDonald House Northern NSW Chief Executive Ross Bingham said the service relied on the generosity of the community to make providing a home away from home for families with seriously ill children possible.
“Children whose families stay at Ronald McDonald House tend to be the sickest, have travelled the furthest distances for care, and spend the longest time in the hospital,” he said.
“Our staff go to incredible lengths to make Christmas a special time for all who are staying in the house.
“Whilst many of us get to enjoy time with those we care about, these families have had to quickly leave their support network and home to be beside their child’s hospital bed.
“It makes what, for most is a happy time of the year, an incredibly stressful one.
“But with the support of these amazing businesses and the community, we can give families the gift that will help them the most – each other.”
The charity is also calling on local businesses to jump on board to support the cause.
For every donation the community makes, each business participating in the campaign will match that amount up to $1,000 each.
Go to the Ronald McDonald House Charities website for more information or to donate.
*Surnames withheld for privacy reasons.