Family holds fundraiser to help fight rare disease

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Posted at: 09/29/2013 12:57 PM | Updated at: 09/29/2013 8:47 PM

Family holds fundraiser to help fight rare disease | www.WHEC.com

The Schilling family held a “bounce extravaganza” fundraiser on Sunday in Gates to fight against a rare disease.

Ella Schilling, of Webster, is three years old and was diagnosed with Pitt Hopkins Syndrome at just four months old. She is one of the less than 250 cases of Pitt Hopkins Syndrome (PTHS) that have been diagnosed in the world. PTHS is characterized by physical delays, severe mental retardation and lack of speech. Many children also suffer from seizures and breathing abnormalities.

Sunday’s fundraiser was held at Unity Health System Total Sports Experience in Gates. The event featured all types of fun, includinga bounce house for kids as well as slides, raffles and crafts.

All of the money raised Sunday will go towards the cause. Ella’s parents say she’s doing great thanks to all the help and support they’ve gotten.

If you would like to learn more about Ella, PTHS, and the fundraiser you can click here.

To view video of event, click here:

Family holds fundraiser to help fight rare disease | www.WHEC.com

For more information, please visit:  www.ellasevent.com

It’s a rare genetic syndrome you’ve probably never heard of before. It’s called Pitt Hopkins Syndrome.

One of those diagnosed is 2-year-old Ella Schilling who lives in the Rochester area.

Her parents, Brian and Michelle Schilling, are holding a bounce extravaganza fundraiser on Sunday, September 29, to raise money and awareness to the syndrome.

The Schilling family spoke with Lia Lando on Roc City Tonight on Wednesday about Ella’s fundraiser and how others can help out. You can see that interview by clicking play on the video player.

You can also click here for more information and how you can help out. The fundraiser again will be held September 29 at Unity Health Total Sports Experience from 4 p.m. to 6 p.m.