BRANFORD, Conn. — A Connecticut family is determined to celebrate their brave 9-year-old and all kids overcoming great challenges.
Doug Rice, a proud grandfather, can’t help but beam while talking about his first of five grandchildren: 9-year-old Loelle Shepler, affectionately nicknamed LoLo
"She is a very strong person and she’s battling through this every day and trying to have the best life she can," said Rice.
Loelle was born with a complex genetic condition called CHARGE syndrome.
The challenges for kids with CHARGE syndrome greatly differ but most are born with life-threatening birth defects ranging from breathing and swallowing complications to hearing and vision loss.
Loelle’s challenges change daily and she and her family are constantly adapting to help her grow.
"Sensory tools and adaptive equipment come with a price tag and the problem is insurance doesn’t always cover all of those items," said Loelle's mother, Marissa. "Children work so hard in their school day and therapy sessions, but they really need access to all those items at home too so they can thrive.”
For many kids, that life-changing sensor in adaptive equipment is financially out of reach — until now.
This month, the Shepler family launched the 'Lolowich'.
They're selling ice cream sandwiches to Connecticut restaurants and breweries. All proceeds - every single cent - goes to a scholarship program on the Lolowich website.
Family, friends, teachers, and neighbors can nominate a child for this scholarship.
"To just watch what she’s endured and had to overcome... this is a no brainer to just pound the pavement and knock on doors and get people involved," said Loelle's aunt Kim Crowley, "This whole project encompasses so much. Not only to be connected to the community and help families not feel so alone but also help your typical children as well who may not understand about other children with special needs.”
Learn more about the Lolowich and how to purchase and nominate on their website.
And find them on Instagram: @lolowich_lifeissweet
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