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jen sarkar | Mom | advocate | educator | real life

@carterschallenge

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jen | mom x2
rare disease & medical mom
advocate •caregiver• chaos coordinator
motherhood, unfiltered✨probably barefoot & elite shower singer 🎶

POSTS STORIES REELS TAGGED

Due to the Coronavirus, many have been social distancing for weeks now. For kids like Carter, who has Sanfilippo Syndrome, staying home is much more critical. Here’s why WE STAY HOME FOR CARTER - link in bio.

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We are so excited for our very first run benefiting @projectsebastian1
The Batten Warrior 5k run-walk is June 6th in Santa Clarita!! Join us in raising awareness for Batten Disease research and helping my son Sebastian have a chance at a full life! Vendors, food and Dj! Go to the link in the bio to register now! 🏃👆🏻👆🏻👆🏻
#run #running #charity #fundraiser #event #5k #battenwarrior #curebatten #disease #cln8 #cardio #fitfam #fitspo #valencia #awesometown

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What happens when siblings of kids with the same terminal illness meet for the first time? They become besties, naturally🥰 Learn more about when super sibs meet in my new blog, link in bio!!!

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Pure joy. Love ya C Money! #blyssphotography #savingcarter #carterschallenge

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A strong family in so many ways. It was an honor to spend time with them at their favorite get away place. Capturing precious moments for them was icing on the cake. Swipe to se our silly wrap photo! #blyssphotography #blysswrap #savingcarter #carterschallenge

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I got to take pictures of this handsome boy at the happiest place on earth. His mom asked if I was up for a challenge- anyone who knows me knows that any challenge I’m up for and I’ll do whatever it takes to prove that I can succeed. Well this challenge was different. I wasn’t trying to prove a point to anyone, not even to myself. The challenge that I was accepting, was experiencing what it’s like in the day of the life of a Sanfilippo child and family. Let me be clear I got a VERY small glimpse as I know it entails SO much much more than what I witnessed. And let me also be clear that these people are saints. I’m not sure how they do it day in and day out as Carter requires (and deserves) constant attention and the upmost hands-on care. I’m in awe of such dedicated, sacrificial parents. If you want to know more about Carter, his story, his family, and Sanfilippo Syndrome please visit his page over at @saving_carter
#blyssphotography #savingcarter #carterschallenge

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#rarediseaseday #sanfilipposyndrome #awareness Repost this to raise awareness! Let’s get the word out about this rare disease. 🦄❤️🦄 Awareness could lead to a cure!! 🦄❤️🦄 @saving_carter @curesanfilippofoundation

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Two days until the release of The B.L.A.I.R. Connection’s first ‘collection’, the Be Positive Collection. It aims to emphasize the positive aspects of a child’s relationship with their terminally ill sibling. Sophia (1st photo) and Katie (2nd photo) are two of the sibling contributors to this collection and we are very excited to share it on Monday.

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This is my mother, Deborah. She’s a warrior. I’ve known that for a long time, but I’m so touched that @brittanyanne recognized it too. Sending so many bisous to her and to all the mama warriors who are fighting for their babies 💋 #BisousForLéo

#Repost @brittanyanne with @get_repost
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Photo 1: This is Carter. He was diagnosed with Sanfilippo Syndrome, which is a progressive brain disorder in little children (comparable to Alzheimer’s). He is only six years old and has started to show signs of the disease. Photo 2: This is Coby. He has been diagnosed with Joubert Syndrome, which is a specific abnormality in the part of the brain characterized by underdevelopment of the cerebellar vermis; causing developmental delays and intellectual disabilities. Coby is 18 months, he cannot walk, he receives most of his nutrition from a g tube and he was recently diagnosed with Hypotonic Cerebral Palsy. Photo 3: This is Leo. He was diagnosed with Infantile Neuro Axonal Dystrophy (INAD) or what most describe it as “Parkinson’s mixed with Alzheimer’s for children”. He is 2 1/2 years old and has been showing signs of this diagnosis since he was one. Photo 4: This is Payton. He experienced his first seizure in 2015 and has since been diagnosed with Cerebral Palsy and Epilepsy. He just turned four and has undergone multiple surgeries, he currently has a trach and a g tube, and can have up to 200 seizures a day. What do they all have in common (besides being pure magic) Not only were they all diagnosed with very RARE diseases/syndromes but they all have ferocious mama bears fighting for them each day. They have taught me so much this year and I am incredibly grateful to follow their journey through social media. I am gifting you all the same gift they gave me this past year- L O V E. If you want to see what love looks like, follow them, connect with them, share their stories, raise awareness because there are no cures for these diseases/syndromes. Thank you Jennifer (Carter), Devin (Coby), Deborah (Leo) and Stephanie (Payton)...you are loved, you are brave, you are the heroes we need in this world and WE SEE YOU. ❤️ I encourage all to pass this message on ❤️

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Give Kids the World Challenge for Hope 5k!!!

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It was great meeting Samir Sarkar, Carter’s Dad, and presenting our donation to the Cure Sanfilippo Foundation today. We are so grateful that we had the opportunity to raise money for this great cause. Thank you all for your contributions! #savingcarter #curesanfilippo #hyattregencyvalencia

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Friends and Afterburn Members, Jen and Samir Sarkar set out on a campaign this month to fund a clinical trial for the son Carter and other kids effected by San Filippo Syndrome. They had one month to raise $1,000,000.00. They have raised an astounding $940,000 and still have 2 days left to reach their goal. Please take a moment to watch their story at @saving_carter or www.savingCarter.com and share their posts in an effort to raise awareness and help this amazing family! •
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#savingcarter #1million1month #ittakesavillage #nowornever #savetheunicorns #curesanfilippo #letsstartthehealing #afterburn #afterburnfitness #afterburnvalencia #afterburnsouthbay

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