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Love letter to "Our SWAN Kid" - Marlene

Welcome back to our series "Love Letters", where RARE Youth Revolution ask our community with a loved one living with a rare disease to write a letter to them.

This entry comes from Marlene, whose son, AJ, is currently undiagnosed, also known as SWAN (Syndromes Without A Name).


Dear AJ,


You are my miracle baby. Our SWAN (Syndromes Without a Name) kid. I didn’t understand why you were chosen to experience all of these medical challenges, especially an undiagnosed rare disease.


We may never get the answer to your disease but why you were chosen has been answered. AJ you are resilient, strong and so charismatic. Your smile and happy energy are contagious.


I vow as your mom, caregiver and voice to advocate for you, for rare disease and disability inclusion until everyone knows who you are and what we are working for, Helping Swans Co. - a nonprofit dedicated to you.


Marlene Soto, SWAN Mom.

 

Instagram: @helpingswans

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