Boy with rare syndrome
lives his own inspired life

     SAN JUAN — Little Kayne Parrott is special in so many ways.
     The just-turned-8-year-old often can be seen at Mass with his father on Thursdays at the Basilica of Our Lady of San Juan del Valle-National Shrine where his Aunt Irma is a volunteer. Kayne (rhymes
with “cane”) might even be spotted happily joining the priest and attendants in procession, only to be quickly retrieved by his dad.
     Kayne began attending church about three years ago and was immediately drawn to the priests celebrating Mass, his father, Buzzy Parrott, said. Kayne quickly struck up a special friendship with the basilica’s priests, especially its rector, Father Jorge Gomez.
     Father Gomez has an affinity for special needs children and is known for his efforts to include them in Catholic life. While at Holy Family Parish in Brownsville, he initiated the monthly Mass there for children with special needs, which continues to this day.
     “They have a special place in my heart — not only Kayne, but all,” Father Gomez said. “He’s a lovable child.”
     Knowing Kayne as he does, Father Gomez some time ago selected him as a model for a statue commissioned for the grounds of the basilica. So more than a year and a pandemic later, Kayne is the special needs child depicted in bronze with St. Francis and friends. The grouping is now installed on the island in front of the Basilica Gift Shop, which on Oct. 14 received a blessing from Bishop Daniel E. Flores. Kayne, his parents, and Father Gomez were in attendance. 
     Kayne fits another definition of a special child because he was born with a genetic condition known as alpha-thalassemia x-linked intellectual disability (ATRX) syndrome. The condition is so rare that only about 500 diagnosed cases exist in a world population of nearly 8 billion souls.

        ATRX affects multiple organ systems of the body, causing intellectual disability, muscle weakness, short stature, a particular facial appearance, and other abnormalities, according to the rarediseases.org website. Another effect can be alpha thalassemia, a condition where there is a defect in the production of hemoglobin, the oxygen-
carrying pigments of red blood cells.
     In Kayne’s case, the syndrome means he cannot speak more than a few words, but he has no problem communicating his joy and enthusiasm.
     Kayne’s attachment to the Mass, the basilica and its priests began when he was four or five years old.
     “We would come on either Wednesday or Thursday for the 5:30 (Mass), and that’s when he first met Father Gomez,” his father said. “And … just right away they bonded. He was just mesmerized.
     “He would just listen to him up there preach and he liked it. Honestly, he even watches (Mass) at home on YouTube. He doesn’t like to watch hardly anything on TV, but he’ll watch that.
     “He’s always loved coming here. Father Jorge and Father Oliver and Father Jaime,” Parrott said. “Those three – he likes to get on the edge of the pew right there, and when they walk by, he’ll stop them. They’ll stop in their tracks, and they’ll bless him, and then they’ll go back on their way. Same thing when they’re leaving.”
     Kayne, who lives with his dad in San Juan, goes to school in Edinburg.
     “He’s in a special unit for other children with disabilities,” Parrott said. “Kayne is non-verbal; he doesn’t talk. He can tell you what he wants by pointing, and he knows a couple of signs. He knows the sign for ‘restroom,’ for ‘hungry,’ ‘hurt,’ ‘question.’ … So he can get his point across when he wants to.
     “And you can pretty much tell him to do anything, like ‘Go get this; go get that,’ and he’ll get it for you. He understands everything.”
     “They’re working on him to get more mobility with his tongue. … He can say ‘Grandma.’ He can say ‘’Ampa.’ For me, he calls me ‘Didi.’ And he can say ‘Mama.’

    This year Kayne is the beneficiary of a special treatment that seems – well, almost miraculous.
     “About six months ago we started on a new pill out of Japan,” Parrott said. “Some scientists came up with it after a study on two little boys in Japan who have ATRX. Within a couple of months, both boys starting talking and even making sentences.
     “A pharmacy in Victoria said that they had all the ingredients. … So six months ago they began making it for him, and I have noticed a difference in his cognitive (abilities),” Parrott said. “He remembers everything. You can tell him something one day and go back a week later and he’ll still remember.
     “I’ve actually seen an increase in his growth, too. He’s already over four feet tall now,” Parrott said. “Hopefully, if he takes it long enough, maybe we’ll see a difference.”
     “Every single child who has (ATRX) is different,” Parrott said. “There’s some that can talk … some can walk, and some that cannot walk. There’s some that can eat on their own and some that are on feeding
tubes. Not one is the same.”
     But the effects don’t get worse with time, the doctors say.
     “The way they are now is the way they’ll be for the rest of their lives,” Parrott said. “… If it’s not going to progress, I don’t know why it couldn’t regress.”
     Kayne’s future, like everyone’s, is in God’s hands. Meanwhile, his joyful likeness in bronze alongside St. Francis is set to greet visitors on their way to the basilica for years to come.