Ellasyn's Journey with McCune Albright Syndrome/PFD

Ellasyn's Journey with McCune Albright Syndrome/PFD Ellasyn was born with a rare genetic disorder called McCune-Albright Syndrome. Unfortunately, Ellasyn has all 4! They are from Appleton, WI.

There are 4 aspects to this disorder and to be diagnosed, you have to have at least 2. Please help share her page and watch for updates!!! Ellasyn is the daughter of James Berry and Leah Suprise. She is a wonderful little girl and has one of the biggest hearts!! She struggles through everyday life and never complains. Please share....she deserves it!! She has to go through life making sure to be careful so not to break a bone which can happen way too easily. She has bones that are very porous. http://www.nlm.nih.gov/medlineplus/ency/article/001217.htm

09/12/2020

****Update on Ellasyn...no surgery. He doesn't want to do anything drastic with her in such a fragile state. We are going to try cortisone therapy on her hip and see if that relieves any of the pain. He thinks her plate and screws look good and does not want to mess with them because too many surgeries weakens her bones even more. She only got this device 16 months ago. Thanks for all the positive vibes. I promise to keep this more updated going forward.

Sorry it's been a bit.....we need your prayers.....on our way to Childrens for an emergency appt.....if shes stable she ...
09/11/2020

Sorry it's been a bit.....we need your prayers.....on our way to Childrens for an emergency appt.....if shes stable she will have surgery. She is in a horrible amount of pain from the plate and screws in her hip. She is heavily medicated right now to make the almost 2 hour drive. We need good vibes everyone!!!!!

Ellasyn is starting her own YouTube channel. Subscribe and learn about her, her interests and of course her disease.
04/28/2019

Ellasyn is starting her own YouTube channel. Subscribe and learn about her, her interests and of course her disease.

04/23/2019

Help me by raising money for FD/MAS research! Every dollar I raise will go directly to FD/MAS research!

Today is a really big day in FD/MAS advocacy! FDF is fighting for more federal research funding for FD/MAS researchers. ...
03/28/2019

Today is a really big day in FD/MAS advocacy! FDF is fighting for more federal research funding for FD/MAS researchers. Senator Jeff Merkley has written a letter that all Senators can add their name to, to show their support for FD/MAS research. We need as many Senators as possible to sign on to this letter for FD/MAS research to move forward!!

Please use this link to send a message to your senator....Ellasyn and many other wonderful people depend on it.

https://rareadvocates.org/voter-voice/?vvsrc=%2fcampaigns%2f64707%2frespond

01/19/2019

Hello everyone!!! ....its that time again and Ellasyn has a HUGE goal. We are near Green Bay, WI so please choose girl delivery when using the link. Otherwise shipping is only 5.75 if 5-11 boxes are ordered. Our council is covering the other half of shipping to help the girls.

https://www.abcsmartcookies.com/ #/shopify-landing/29d8bf3e-a5e3-4d85-a5d4-930f49c7a913

Check comments for flavors!!!!

Hanging out in the Secret Garden at Ronald McDonald House before more appointments tomorrow.
05/15/2018

Hanging out in the Secret Garden at Ronald McDonald House before more appointments tomorrow.

05/15/2018

Address

Appleton, WI

Website

Alerts

Be the first to know and let us send you an email when Ellasyn's Journey with McCune Albright Syndrome/PFD posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram