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Raising for Rett

Collyn Disney. Photo courtesy of the Disney family.

Picazzo’s Healthy Italian Kitchen Fundraises for a Personal Cause

Picazzo’s Healthy Italian Kitchen is doing an ongoing fundraising campaign – “Raising for Rett” in an effort to fund a cure for Rett Syndrome – a rare neurological disease.

It comes from a personal place as Picazzo’s managing partner, Chris Disney and his wife recently learned their young daughter, Collyn, has Rett Syndrome.

After noticing some developmental delays compared to their other three children, Chris said he and his wife began asking questions.

“We kept asking our pediatrician, but they were telling us she was fine,” said Chris. “Around 18 months it seemed like she started to regress.”

Eventually, the Disneys were referred to a neurologist, switched pediatricians, got some genetic testing done, and that’s when they got the positive result for a gene mutation indicating Rett Syndrome.

“You almost want to lie to yourself and say that’s not what it is,” said Chris. “It was a challenge. We didn’t know where to go and where to start.”

Rett Syndrome is a condition that doesn’t allow some cells in the brain to produce a protein needed for brain development. It involves symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorder, www.sleepmedsite.com/page/sc/our_services/ativan_lorazepam.

“She’s nonverbal and doesn’t walk,” said Chris about his two-year-old daughter. “She’s miserable a lot. It’s like she’s trapped in her body. It’s a struggle because there’s nothing you can do and no answer right now.”

Between multiple therapy appointments and the difficulty it poses to leave the house with Collyn, Chris says it’s completely changed the way they live their lives.

“We can’t really leave the house. She’ll be alright in the car seat for a little while, but once you get her out and try to sit her somewhere, it’s a challenge. You don’t know what she wants,” he said. “If one of our other kids has an activity, my wife and I have to trade off staying home with Collyn. We have a swing in her room, and that’s the biggest thing that will get her to calm down. Sometimes we spend hours in there with her on that swing like a prison trying to console her.”

While there is currently no cure for Rett Syndrome, the research and discoveries are promising because the exact cause is known.

Chris and his family remain hopeful that they will see a cure for Collyn in her lifetime. Until then, he said he just hopes for his daughter to be happy.

“Before it was ‘as long as they’re healthy’ now it’s ‘as long they’re happy and content’” said Chris. “If she has to deal with this, I’d just want her to be happy.

Picazzo’s is donating $1 for every oven-baked chocolate chip cookie dessert sold at any of the six Picazzo’s locations in Sedona, Scottsdale, Tempe, Paradise Valley, Arrowhead, and Gilbert.

Donations can also be made directly to Picazzo’s “Raising for Rett” campaign at rettgive.org/campaigns/supporting-rett-syndrome-research



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