PACK WITH ME FOR GEORGIA!!! GOING TO MEET 4 OTHER SANFILIPPO FAMILIES

Pack with me! Owen + I are heading to Georgia to visit 4 other Sanfilippo families this weekend! Stay tuned for when we are back home for the memories from our trip. These are the days!
Thank you for taking 'one day at a time' with us and sharing all of the emotions + experiences in between. xx
[ AWARENESS + DIAGNOSIS ]
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 on our channel with us to help support Owen and help spread awareness.
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♡ REALTED VIDEOS TO WATCH:
When JoJo came to visit!
• WE HAD A SPECIAL VISIT...
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♡ SOCIAL LINKS:
Follow us on Instagram! @lifeinthelyonsden
Our shop: www.thehouseoncollegeavenue.com/theshop
Owen’s Story on Facebook: / owensmpsstory
♡ MENTIONS IN THIS VIDEO:
OWEN'S GAIT TRAINOR
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OUR CARRY-ON LUGGAGE SET
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LARGE STROLLER BAG
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OWEN'S LARGE JOGGER STROLLER
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