Lucca is 3 years old. We found out a few months before he turned age 2 that he has a very rare syndrome called Phelan-McDermid Syndrome (PMS).  Lucca is one out of 600 people diagnosed with this syndrome in the entire world.  What this syndrome affects is Lucca’s speech (he is and most likely will always be non-verbal), his physical development (he is still non-ambulatory and unable to crawl or stand), and his cognitive development (he is cognitively the age of 0-6 months).

Lucca also has a condition called Trisomy 10 which was caused by an unbalanced translocation between chromosomes 22 and 10. The deleted part of 22 (Phelan-McDermid Syndrome) switched over and is now attached to the bottom of the 10th causing a trisomy. This significantly delays his cognitive development as well.

Lucca is currently 100% dependent upon us for every aspect of his life. He is unable to communicate his needs, unable to self feed or dress and may possibly never be potty-trained. He will need care his entire life. Luckily our God is a healing God and we aren’t giving up hope that God is going to work a miracle through Lucca’s life and heal his little body, tongue and brain.

L. McLendon
Jacksonville, FL

1 thought on “Lucca: 1 in 600 with Phelan-McDermid Syndrome”

  1. lena says:

    hi my name is lena
    I a m from Poland I have son .In august this year he will 2 years old .jacob is diagnosed with the same syndrome what your boy .but what for me was the reason why I write to you I started to cry when I found first time few months ago yours son pictures .
    The thinks is my boy look now like a twin brother of your son ,even the shape of their teeth looks the same .my god..
    I hope you still have power and love to cope with him
    all good

Comments are closed.