‘Believe you can and you are halfway there’ – Theodore Roosevelt
Little Luna, hasn’t even turned one yet and has battled the fight of a lifetime. Lovingly known as Warrior Princess Luna, she was born with a rare genetic condition known as Kleefstra Syndrome.
Kleefstra syndrome affects development and involves many body systems but along with this, Luna is one of a kind, in the most beautiful way, being the only known child who has Kleefstra Syndrome & another abnormality on chromosome 12. There are only 30 other people in Australia with Kleefstra Syndrome.
La Toya and Cameron are Luna’s parents and there is also two-year-old Forest riding this roller coaster that has been Luna’s journey.
When La Toya was pregnant, there was no indication that Luna was going to have a hard start to life. After Luna was born in Hervey Bay Hospital she was immediately put onto a Cpap Machine and with a weak pulse and heart murmur, she was sent to Brisbane at only two days old.
There, they discovered Luna had two holes in her heart (ASD & VSD), one measuring 13mm long and which kept the heart from pumping blood currently through out her little body. La Toya and Cameron fought hard and at 10 weeks old, after going into heart failure, Luna underwent an open heart surgery to fix her heart. Luna also spent 49 days intubated, got Cardiac NEC, had 2 blood transfusions, a collapsed lung & had many Bradycardia episodes. La Toya describes this as the scariest 110 days for their family not knowing if they would take Luna home.
‘It was terrifying with what Luna had gone through at this point and we fought hard to get her surgery because either way, it was a risk, but we had to take it.’ It worked and Luna started improving.
Today, Luna is going leaps and bounds and is improving every week. Luna is determined to prove that she can do what doctors said she couldn’t. Despite the need for oxygen 24/7, Luna has already reduced the amount of oxygen she needs daily and continues to work with a physiotherapist to gain muscle and maybe even walk one day.
You can follow Luna’s journey through their Facebook page – Warrior Princess Luna. La Toya writes the most beautiful ‘Dear Luna’ posts each day as a way of remembering each hurdle they have overcome and each joy they celebrate.
“Luna Spent almost five months in hospital fighting for her life, so she’s only had five months of real life’. She’s started her living a bit later and although she’s a bit behind, she’s fighting strong” La Toya said.
Forest is taking a big-brotherhood role well and we can’t wait to watch him and Luna grow together.