A NOTE FROM THE YOUNG FAMILY
We are the Young family. We have two children, a son and daughter. Our daughter Kori is three years old. Our son Jaylen is two months old. Kori Bear has Intermediate Severe Salla Disease, diagnosed just a week after her brother was born.
Our Kori Bear is a light in this world. In our world that has been filled with specialists and doctor visits since the day we found out we were pregnant with her. Her father and I were 19 and 18 years old when we found out we were expecting for the first time. Yikes! We had no idea what we were in for. Kori’s 3 years on this earth have been filled with specialists and MRIs, x-rays, special equipment, therapies, medications, hospital stays for weeks at a time; but when you look at her, you don’t see a life full of pain and stress. You see this little angel, a happy little girl who just wants to be included and talked to.
When my husband and I went into the genetics appointment the day they said they found something, we hoped for the best and expected the worst. Nothing could have prepared us for the words we heard. Genetic. Degenerative. Ultra-rare. No treatment or cure. Can live into early childhood. I sat there hysterical, looking at our week-old son, thinking that there is the chance of us losing not only one, but two children. Our hearts are broken.
That night, I googled everything I could. I sent an email to sallaresearch.org asking for everything, any breakthroughs, doctors, anything I could find to help give us hope. I found Jessica Foglio. God bless her and her family for creating this foundation, for reaching out, for the phone call at 10pm that night that lasted over an hour. Thank you, Jessica, for crying with me.
The Salla Treatment and Research Foundation has given our family hope. I pray every day that we find a treatment for our daughter. I pray that we can make a difference in other families’ lives. I pray for the doctors who are working with the foundation. I pray for other families. I pray that one day I will get to hear Kori say, “I love you.”
This is the scariest thing a parent could ever go through, watching your child go through something like this. But I am thankful that we have the community we do to help us get through each and every day. Thank you to our family and friends who have prayed for us and prayed over us. We could not do this without you.
Kori Bear, we will never stop fighting for you. We love you!
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