hopeformarian hopeformarian

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Hope For Marian  Marian is two and fighting against fatal NPC. But a cure is in sight. Help by following our story, donate to help #cureNPC and give #hopeformarian

Nothing quite like getting a hug from the doctor trying to save your life. 8:20 am fasting liver scan, 10 am cognitive assessment, 11 am motor, lunch time interview, 2 pm swallow study, 3 pm neuro assessment and 4 pm to the airport. And it's snowing. Phew! We are tired but so excited. Good results so far, will have them all soon 🤞🤞❤️ #hopeformarian #luckygirl🤞

Marian and Sama. Two courageous two year olds who are in the fight for their lives together against NPC. Sama's smile lights up the room. He travels in for his treatments and is seeing wonderful gains. Today they got to meet for the first time and are fast friends. I hope they will grow up together ❤️ @hopeforourson

Waiting for the shuttle to get to the airport. Chicago here we come, and we are coming in walking this time! 💪🤞#hopeformarian #toddlertravel #curenpc #fightnpc #niemannpick

Keeping these New Orleans Make a Wish dolls close by as I pack tonight. Marian and I are off to Chicago tomorrow for her one year check up on the medicine to slow the progression of NPC. Bringing back all sorts of nerves of the reality of this horrible disease and also how hard it will be to be away from Emily. We fly in just the two of us tomorrow and then will meet up with my cousin and friend, Sunday will be for fun and travel rest. Monday are all sorts of assessments, tests, and clinic appointments to check every level of her cognition and development to plead that the destruction of NPC is being held back. In the words of Bruce Springsteen, "counting on a miracle." #hopeformarian #nervousnelly #makingawish

This junior jelly bean is giving me a run for my money. The biggest sign, she insisted on wearing (aka screamed and ran clutching them while yelling "on on on sissy") Emily's dirty pink pajamas from last night over her pants. She wouldn't put on socks. Or another shirt. We barely made shoes happen. And she almost launched me into oncoming traffic today having a tantrum over having to sit in her own car seat instead of Emily's. And, my personal favorite, when she's mad she tries to hit me. She's definitely two!!! 🙌 I'll still keep her, she's still pretty cool. Even though she's a terrible listener right now. Seriously, terrible. And it's on purpose. As they say, it's "developmentally appropriate." And yes, Emily still has her braids in from Sunday. 🤷‍♀️❤️

Hoppy Easter (and Passover, too!) #hopeformarian #sistersister👭

Lauren (top left) came into our lives as a babysitter when I told her Marian was having some testing but the doctors think she'll be completely fine. And she was there when that changed. She happened to be over when I got the call from the doctor saying Marian has NPC. I could hear Lauren making Emily and Marian laugh and at the same time heard the words serious and fatal. She came with us to the doctors, she rocked Marian to sleep, grabbed groceries, she picked Emily up from school and took her to ballet once. She became part of our family and made her heart more full in a time of emptiness with her beautiful heart. She has now moved back home after college and her amazing family, friends, coworkers and clients are supporting Marian and NPC with an incredible month long fundraiser at @salon77west. We couldn't be more honored to be part of this group who are helping to fight forward with grace and great hair! #hopeformarian #niemannpick #niemannpicktypec #curenpc #fightnpc #salon77west #nopuckerchallenge #hairstylists #haircare

Ball pits, making kids super happy since invention! Lost in the ball pit: one barrette, one pink sock. Marian chased the SIX other little girl friends we went with straight in there and it was so awesome to get to see her participate at her own pace instead of having to sit back and watch - we are so lucky to have gotten an early diagnosis and access to a treatment, now we need to keep it and find more to hold on to the good days for Marian and so many little ones like her. Possible, yes? 💪🙏#hopeformarian #niemannpick

The best snuggles. It even made watching Star Wars feel cozy. The last couple weeks Marian is just doing awesome. She's regularly using two word phrases, is almost able to run and is exploring the world and leaving a trail of chaos and snacks in her wake - just as a two year old should be.

We have a friend in Florida that we have never met. A few months ago a six foot tall body building nurse with a heart of gold trained for months to ride his bike across Florida. He went on television in a yellow spandex jersey to help raise awareness. He and his wife organized a national fundraiser on top of full time jobs. After biking for three days, at the finish line he held a three year old boy in his arms who has already had a liver transplant and eleven surgeries from NPC. He hugged a girl fighting to maintain her ability to walk and cruises around Alabama in her pink wheelchair. She is six. .
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He had never met anyone with NPC or us, and he did this to help Marian and every child fighting for their lives. And today, he mailed us his jersey and a jar of sand from the east and west coast of Florida. The start and finish of his first ride for Marian and NPC. We are keeping it on Marian's shelf underneath her angels, because he, @seanrn09, is one of ours. 💛
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#hopeformarian #hometownhero #fightnpc #curenpc #niemannpick #bikejersey

Both outfits got changed afterwards. Both got completely soaked. Both intentionally. Happy girls. #hopeformarian #familyroadtrip

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