STAR children Kori and Jaylen.

Kori & Jaylen

This is the English version, you find the original version below

A note from the Young family

We are the Young family. We have two children, a son and daughter. Our daughter Kori is five years old. Our son Jaylen is two years old. Kori and Jaylen both have Intermediate Severe Salla Disease, diagnosed 2019 and 2020.  

Kori and Jaylen are 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 Kori. Her father and I were 19 and 18 years old when we found out we were expecting for the first time.. 

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. We had no idea what we were in for. Kori and Jaylen’s life 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 them, you don’t see a life full of pain and stress. You see two children who just want to be included and talked to.

That night, I googled everything I could. I sent an email to the STAR foundation 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. I pray for the doctors who are working with the foundation. I pray for other families. I yearn for the day I hear Kori and Jaylen say, “I love you.” 

This is the scariest thing a parent could ever go through, watching your children 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 & Jaylen, we will never stop fighting for you. We love you!

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