Come along to see some highlights from our recent trip to Nashville for the MPS family conference this year! We are already missing the trip + our people + can't wait to see everyone again. These conferences are filled with fun, conferences, doctors + other families who 'get it' and it's a special kind of connection that we need as a part of our tribe. It feels like HOME when we are here with everyone. We got to see our closest friends who are family + were blessed to meet new families as well!
I tried to capture a little bit of everything that we did over the 4 days that we were there and I hope that you enjoy watching!
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[ AWARENESS + DIAGNOSIS ]
Owen lives with Sanfilippo Syndrome. Also known as MPSIIIA, it is a rare, genetic, degenerative and terminal disease. This means that Owen’s brain will be permanently damaged by cells over time and he will eventually lose all skills, such as walking, talking, eating, etc. It is a childhood disease, also known as childhood Alzheimer’s and most, sadly, don’t make it into their teen years. Each individual is living a different journey in this horrible disease and this is ours. Thank you for being here with us to help support Owen and spread awareness.
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Owen’s Story on Facebook: / owensmpsstory
28 авг 2022
