♡ Meet Jolene!
We had this newly diagnosed Georgia peach Sanfilippo Sister and her mama stay with us this past weekend and it was so, so special! Owen is 12 + Jolene is 5. This time together is so cherished as our kids may not be the same the next time we are able to get together. They met through FaceTime the night before arrival and you are seeing their first time meeting! Come and spend the weekend with us and see a little behind the scenes of living with the attenuation of Sanfilippo Syndrome. These are the days!
Thank you for taking 'one day at a time' with us and sharing all of the emotions in between. xx
[ AWARENESS + DIAGNOSIS ]
Sanfilippo Syndrome, also known as MPSIIIA, it is a rare, genetic, degenerative and terminal disease. This means that Owen + Jolene's brain will be permanently damaged by cells over time and they 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.
♡ Please SUBSCRIBE to our channel.
-------------------------------------------------------------
♡ REALTED VIDEOS TO WATCH:
GET TO KNOW HIM: AN INTERVIEW WITH OWEN!!
• AN INTERVIEW WITH OWEN...
-------------------------------------------------------------
♡ SOCIAL LINKS:
Follow us on Instagram! @lifeinthelyonsden
Our shop: www.thehouseoncollegeavenue.com/theshop
Owen’s Story on Facebook: / owensmpsstory
20 янв 2023
