Love for Lennon

Hi Everyone,

This is a gofundme on behalf of the Ballet Rincon Community for Hannah Novinski and her family. Hannah is a Ballet Rincon alumni and was also on our staff for a number of years.

On Sunday, Hannah announced on her social media the following news about her oldest daughter Lennon:

“It is with heavy, broken hearts that we write this update. Lennon’s genetic tests came back and she was diagnosed with Infantile Batten Disease. This is a degenerative neurological disease. Her body doesn’t produce an enzyme to take away the waste in her brain, so as the waste builds up it slowly kills the nerve cells in her brain causing her to lose functions such as speech, movement, swallowing, sight and cognitive abilities. The seizures are also part of it. This disease slowly kills her brain and will eventually kill her.

There is no cure for Batten Disease and most kids who have the infantile version don’t live into their early childhood. Because it is so rare there aren’t many treatment options either. And treatments don’t reverse anything that has already been lost, it only prolongs the inevitable.

We met with the geneticist at Phoenix Children’s to discuss next steps for Lennon. She told us that Lennon has about 6 months before she loses all her functions. It is going to be a hard road ahead for Lennon as this happens and that our job (with the help of her doctors and care team) is to do everything we can to keep Lennon comfortable.

For Garrett and I, Lennon’s quality of life is our number one priority. We will do everything we can to make sure she lives life to the fullest and is comfortable doing so. There is so much we want Lennon to do and see in such a short amount of time.

We are absolutely heartbroken that we are going to lose our Lenny girl. The girl that lights up a room with her smile. The girl who other children are drawn to. The girl that lives life to the fullest and is a fighter.

As we left the doctor’s office after receiving this news, her doctor told us to BE BOLD. That’s what we are going to do. We are going to live like Lenny is dying, making the most out of the time we still have with her.

Lennon is so blessed to be loved by so many people. She will need all the love and support as her disease progresses. Thank you to everyone for loving our little girl ”

Anything you can donate to help this amazing family would be greatly appreciated.