One day at a time

Three-year-old Breana is a very cheeky, happy child, that lights up any room she is in. She loves music and dancing, and she loves receiving attention.

Breana however, lives with a life-threatening condition, which makes every day a little uncertain for her family.

Breana was diagnosed with DiGeorge Syndrome only a couple of days after she was born, which is a syndrome caused by the deletion of a small segment of chromosome 22. While the symptoms can be variable, they often include congenital heart problems, specific facial features, frequent infections, developmental delay, learning problems and cleft palate.

In the first two weeks of her life Breana had open heart surgery and surgery to repair her laryngeal web.

Her parents were aware of heart defects in their 14^th week of pregnancy but all the other issues came as a completely devastating shock. Breana, is now unable to eat orally, she cannot walk, talk or hear properly, her immune system does not work and she has severe breathing problems.

“In the first 5 days of her life, I felt like every time I used to see her in the ICU,there was another specialist waiting there to tell me something I didn’t want to hear. Her heart was a lot worse than what we were expecting” explains Breana’s mum, Nicole.

After four and half months in the hospital, Breana was finally home with her siblings, George now 10, Jason 7, and Adelyn 6.

Breana has celebrated three of her very important milestones in hospital. On Christmas Day in 2014 it was the very first day she was able to breath on her own. She also celebrated her first two birthdays in the hospital. Breana’s first cardiologist didn’t think she would make it to the age of three, however she turned three last year and got the chance to celebrate with her family at home.

“She is very determined and strong willed. She idolises her siblings, she follows them around as much as she can and she tries to play with them all the time. It’s like she can tell the time because she always looks out the front door when she knows they will be coming home from school. Because she is non-verbal we’ve also started practicing sign language which is going well” says Nicole.

The Zois family were referred to Very Special Kids in 2016 which meant the family could recharge their batteries and have a little normality back in their lives. Very Special Kids provides Victoria’s only children’s hospice where children with life-threatening conditions can receive specialised 24 hour care in a home like environment, and families can have some much needed respite.

“Breana loves the hospice, when we walk through the door she is all smiles and can’t wait to interact with people. She feels at home, which is very important for us” explains Nicole.

Having a sibling with a rare genetic condition, can deeply affect a child.

“It’s been really hard for Breana’s siblings, especially because of their ages. They have had to miss out on a lot of things since she was born, we have pretty much spent nearly every school holidays in hospital. George being that little bit older worries about her a lot, and he asks a lot of questions about if she is going to die every time she gets sick, he gets really anxious” explains Nicole.

George, Jason and Adelyn love attending Very Special Kids Sibling Days, it’s their chance to be kids, explore their emotions and reduce any sense of isolation with other kids facing similar challenges.

Very Special Kids also offers family accommodation where parents can stay in picturesque Malvern free-of-charge for a nice escape with their whole family while their child is safe in the hospice next door.

“It is such a huge relief to know Breana is being so well looked after with Very Special Kids. I don’t have to worry for that period of time, I can finally switch my brain off and relax a bit.”

The Zois family also receive counselling support provided by Very Special Kids, which they find invaluable.

“Pauline’s support is fantastic, we are always in regular contact, and if I am having a bad day I can pick up the phone whenever and chat to her. She does a lot of home visits too. The kids love her and always ask when she’ll come over again” says Nicole.

“Knowing that Very Special Kids is there has helped us get through so many tough times. Breana still requires at least one more open heart surgery but she’s not suitable for it at the moment, and we don’t know if and when she will be. We just have to take it one day at a time.”