GoodGrandma℠ has been posting a lot about Angelman Syndrome and Jumping for Jett. Well, tomorrow is the big day, it’s Jett’s first birthday. We would like to ask everyone to join in #jumpingforjett! Here is some additional information from Jett’s Mom about Jett, jumping, and a cure.
I am sure you get these kinds of requests all of the time, and I am sorry for the pressure that puts you under. I totally understand if you feel like it isn’t something you can accommodate. I know this is your business, and livelihood. I really, really respect you for that. I just ask that, from mother to mother, that you continue reading before making a decision.
My name is Miranda. I am local to Utah. My Husband Ryan and I and have two little boys. Our youngest, my sweet little baby, at 6.5 months old, was diagnosed with Angelman Syndrome (AS). It is a rare genetic condition that occurs in about 1 in every 15,000-20,000. Virtually nobody has ever heard of it, and I am doing everything I can to bring awareness. That is all I am asking for from you. Help in bringing awareness. With such high hopes on the horizon, (Spoiler Alert- they have cured it in mice and are hoping to move to human trials NEXT YEAR!) I can’t help but to do everything in my power to aid in this incredibly hopeful research!
I know you might be wondering, what is AS!? Here are a few quick facts!
- The individuals have developmental and motor delay. For example, Jett (almost 1) still can’t consistently roll over and only ever has about 10 times. (Typically a child can roll over by 4-6 months) It’s heartbreaking watching my baby try so hard to get his brain and body to communicate. He tries and tries to roll over, but, his body does not cooperate.
- They never have ANY speech (the most heartbreaking fact for me personally. Knowing I will never hear his voice call me Mama almost kills me). Very rarely some can say 1 or 2 words or use 1 or 2 signs. But otherwise they depend on a communication device to help them relay their needs to their parents and caregivers.
- Most will walk, but it doesn’t happen until much later around 3-4+ years of age and not without A LOT of effort on their part. Some never able to walk and will be wheelchair bound.
- Seizures happen in about 85% and typically begin after age 1. The thought of all the complications that this fact has in store for my baby is so awful.
- They do live a full life, but will always be 100% reliant on a caregiver. Not ideal for either of us. I want him to live a life of joy outside of his trapped body.
- AS individuals are known for their white hair, and happy, smiley demeanor. You can’t make eye contact with my little Jett without him melting your heart with his full body smile and contagious laugh. He is seriously just the sweetest, happiest little guy!!
If you want to learn more about my sweet guy, AS, and a cure please check out our website – jumpingforjett.com I have lots of info there and a few videos as well!
So, the MAIN reason I am hoping to get the word out, and the funding UP is because as mentioned above- AS has been CURED in mice!! CURED!! I mean, I die. This means it is on the horizon in humans! And they’re hoping to begin next year! 10 years ago, the thought of this was incomprehensible as I’ve heard from other AS parents. But here we are! How amazing is that?!
What does that mean for my baby Jett? Good question, and honestly I’m not 100% sure. As parents, we try to do anything in our power to give our children the best lives possible- but so much of that has been taken out of my hands with a diagnosis like this and I am just doing everything I can to do my part in making Jett’s life the best it can be! A cure could mean a completely changed and better life for him, or it could mean nothing. But it could still help families in the future catch this at an early enough stage that their child’s lives could be changed, and for me that’s just as big of a deal as helping my own son!
I really want to get the word out and increase the awareness of this condition and raise money for the cure! After all- they can’t get to human trials without funding! And what better way to reach a huge audience than through social media! I would love if you wouldn’t mind sharing something on October 10th (Jett’s 1st Birthday). Whether you participate and donate and post a video of yourself or your kids jumping and follow the steps in the message below (which I would be beyond grateful for!) Or just post something to your profile or story to notify people! Either/or would be amazing and so so appreciated!
If you have any friends that would be willing to share as well, please feel free to share with them before October 10th! Many hands make light work. The ice bucket challenge was well worth the little bit of effort from each person that participated. It raised over 115,000,000 for ALS research. Absolutely incredible. All proceeds from this campaign will go directly to the Foundation for Angelman Syndrome Therapeutics (FAST). I have no hopes, or desires to profit a single penny from this campaign. I just want to help my little boy, and do all I can in hopes for a healthy future for him. I would love, and be so, so grateful for your support.
Here are some steps to follow if you want to participate! Some might find this helpful to post in the caption as well to direct others in what to do.
Would you join with us in celebrating Jett’s (@jumpingforjett) 1st birthday!? Here’s what we’d love for you to do!
- POST, HASHTAG, DONATE, CHALLENGE
- On OCTOBER 10th, Post a video of you or your child “Jumping” for Jett on your Instagram or Facebook page! Since Jett isn’t able to jump (yet, we hope!) We want YOU to do it for him! For two reasons. One- for you and your family to gain an appreciation for their moving, fully functioning body. Two- to show baby Jett your support of his journey! (think jump rope, trampolines, 4wheelers, skateboards, jumping jacks, etc. The options are endless- feel free to be creative!)
- Use the hashtag #jumpingforjett so we can see them! This will be a lifelong birthday gift for him! Even the thought of seeing your family support my little man brings tears to my eyes.
- Donate to our FAST CAN page (donations go directly to the foundation) Multiple button links are included on our website jumpingforjett.com or here is a direct link- https://2018-can-community-challenge.everydayhero.com/us/jumpingforjett
- Tag a couple friends who love to jump to challenge them in doing the same!
I am also including some pictures that can be used in a story if you’re more of an insta story person! 🙂
Thank you so much for your help in making this the best 1st Birthday for our special little Angelman Baby Jett!!!
Seriously, from the bottom of my heart, thank you for your time and consideration! I truly hope you’ll join us. It would mean the absolute world to not only me and Jett, but our entire AS family.