Zoey Smiles (My heart is broken)

Carin Zoeller is organizing this fundraiser.

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Hi my name is Carin Zoeller and I created this page for my great niece and her family during these difficult times. On August 25, 2023 My nieces beautiful daughter got diagnosed with Nieman Pick Type C. We had never heard of this disease so we ran to google to find out more as we waited for appointments and updates from Zoey's mom & dad. This is an awful extremely rare genetic disease that is always fatal with no cure. This news has flipped their family upside down. I am hoping to help soften the burden on this beautiful family with everyone's help. They have started an experimental trial in Chicago in hopes to slow the progression for sweet Zoey down to buy them time for a cure! Niemann-Pick type C affects the brain and other organs, leading to progressive intellectual decline, loss of motor skills, hearing, seizures and dementia in children and adults. It is commonly known as children's Alzheimer's. Zoey is 8 years old and her doctor has suggested making as many memories as possible while she is still capable. If you are able to donate our entire family is extremely grateful if you are not able to donate please share and send thoughts and prayers this sweet girls way. All proceeds will be going to the care of Zoey, lost wages (so both parents are able to be by her side during trials), any type of medical Zoey may need now or in the future, travel expenses for trials, & most importantly more SMILES for Zoey! Help us give her AMAZING memories just like the doctor prescribed.

For faster updates please check out the Zoey Smiles page on Facebook Zoey Smiles

Chicago UPDATE from Mom & Dad: 10/01/2023

I want to thank everyone that took the time to blow Zoey’s video up with comments. We had a rough couple days and I am not exaggerating when I say reading your comments to her brought the biggest smile back to her face EVERY SINGLE TIME! It paused the headaches, it gave her a 2nd wind through the exhaustion, & it made her eyes glow with confidence. She wholeheartedly believed the positive affirmations you all flooded her with! Below she was defeated! She didn’t want to do another test, they hurt her legs, and she was just exhausted! We weren’t even halfway done with the day & our hearts were aching as parents knowing in our mind she has to do these test to help find a cure but in our hearts wanting to rip every cord, wire, & sensor off her and take her home! Your all's comments got her through! You all gave her the extra push to kick those tests butts! From a struggling Momma please know that it meant the world to me and you all are absolutely amazing for taking a minute to put a smile on our girls face when you didn’t have to! You didn’t just save her you saved me and her dad. You warmed our hearts and kept us all positive.

No new updates from Chicago just all the baseline testing so we have something to compare to next year. We caught it early so she doesn’t qualify for any other trial but the one we had already selected. The FDA does not seem to like helping with NPC because it’s so rare and not a lot of money in it. They have pulled all the other trials or made it to where she will not qualify for any of them until her quality of life is awful and the disease has robbed her of everything she has (hearing, mobility, speech, learning, swallowing & so much more). But there is one promising trial we are praying gets through the FDA this year. Not a cure but could buy our girl some time! I have found an amazing set of mommas to team up with to help take a stand against the FDA and to get genetics testing in the newborn testing at the hospital at birth! I am taking the diagnosis in, I am trying to process everything, I am feeling what I need to feel, then I plan to stand next to those Momma warriors and help in anyway I can!