Evie, our Tango2 Princess!!

Hi everyone,

My name is Kacee and I just wanted let the world know I have the most delightful blessing anyone could ask for!

Evie is the most incredibly unique person you will ever meet. My late father once told me that 'her condition only made her that little bit more special than the perfect girl already is'.... It only like winning the lottery 5 times in a year!!

Her condition affects nearly everything, but she lets nothing affects her.

Evie was born at home perfectly healthy. She was the perfect baby. Always a happy, outgoing girl, with an infectious smile. She was achieving all her milestones at the appropriate age until just after turning one.

 

Evie started started having seizure/stroke like symptoms, leaving her paralysed for extended periods at a time on a regular basis. She became more clumsy in her walking. We started asking questions. I felt for a while, specialist wouldn't really believe us, being disregarded and having what I said minimised everytime. But like Evie I was determine minded and kept asking.

 

We finally got our answers September, 2021. We found our wonderful team. But our worlds were turned upside down. I watched as Evie went from a seemingly 'normal', bubbly little girl, to unexplainably falling unconscious one day and waking up, dancing with Tango2. Overnight she permanently lost her ability to walk.

In the following months we saw more regression. Leaving Evie unable to crawl, feed orally, sit up or even manager own secretions.

No set back has dimmed the beautiful light she carries through our journey though. Heartbreakingly we have to watch our precious little girl struggle gracefully, with her infectious smile. Taking every challenge as it comes so bravely. Spreading joy and love where ever she goes.

 

Evie conditions is progressing, and there is no cure, we can only offer her supportive care. The genetic disorder was found in 2016. Still very unpredictable to everyone who deals with it. And although it's name is pretty, Tango2 shows its ugly, scary side.

It's now affecting Evie heart function.

On the 25th of February, 6am, due to be discharged, I sat and watched as my beautiful little girl smiled waking fine. In minutes there was near 15 people in the room and we where rushed to PICU. We were sat down more than once and told Evie wasn't going to make it. She then had 45+ arrhythmias in two days and was showing server cardiac dysfunction. We were told there was no point in any form of resuscitation. Her heart was slowly giving up.

But Evie and her determination didn't. She has improved in all areas, but we are now reminded our time is borrow and our future is extremely uncertain.

 

In recent difficult times we have also lost our beloved Boppa, Grandma Amanda and our family home. Evie has been the one to show strength for all of us. Never letting the world get her down. Infecting everyone with big, beautiful, bright smile. Her determination is inspirational.

Treasuring every minute we have, we would like to make the most of our time with her. Giving her the best quality of life possible.

 

Any help to give her that would be muchly appreciated.

Thank you for taking the time to read about Evie!