Thriving with Alfi's Syndrome

Thriving with Alfi's Syndrome
Landon Nazworth of Iowa is one of an estimated 250 people in the world living with Alfi's Syndrome.

CALCASIEU PARISH, LA (KPLC) - Five years have passed since we first introduced you to then three-year-old Landon Nazworth of Iowa.  He is one of an estimated 250 people in the world living with a rare condition called "Alfi's Syndrome."     

We checked in with the family today to see how this boy is beating every odd.

At seven years old, Landon Nazworth is full of life, full of energy, and full of personality.

"He's so active and he loves being helpful," said Landon's mother, Kristen.  "He loves being with other kids, he loves his brother and sister."

This is a life Kristen and Nathan Nazworth couldn't have imagined when Landon was born and they were given the most devastating news.

"He wouldn't talk, he wouldn't recognize us, he would just be there physically, just be there without emotion or anything," said Kristen.

The diagnosis: chromosome 9p deletion syndrome or Alfi's Syndrome - no known cause and no known treatment.

"When the doctors came in and told us, they handed us a sheet of paper out of a 1970s textbook, had one paragraph and said, 'this is all I can tell you about this syndrome that your son has,'" said Nathan.  "We didn't know what to expect, we were overwhelmed, we spent many days crying and trying to figure out what the next step is."

Even in their grief over the blow of this medical condition, the Nazworths could see a light in Landon.

He learned sign language at a young age and eventually began talking, then to every doctor's surprise, walking and running.

"I love to see him just happy, running around playing, because the doctors gave us zero hope of him even walking.  It brings so much joy to me," said Nathan.

This progress has not come without tremendous efforts, though.  Landon has gone through multiple surgeries and years of therapies.

The Nazworths say their faith keeps them encouraged, along with a support group through the Chromosome 9p- Network, connecting them to other families around the world facing the same trials and triumphs.

"We can talk to them about it and get a better understanding for how they're handling it, we can give them ideas for what we do," said Kristen.

Those conversations get to happen in person every three years through the network's family reunions and for the first time ever, Louisiana will host it this summer at the West-Cal Event Center in Sulphur.

The Nazworths hope other families can meet Landon and see what is possible in spite of a serious diagnosis.

"He is just joy," said Kristen, "He brings joy and happiness to hear him laugh and see how happy he is...it's just such a joy."

"God put his hand on Landon, he blessed me and Kristen with him," said Nathan, "and to see him in his every day life succeed is really an accomplishment to us."

The worldwide event for people with Alfi's Syndrome is happening July 21-23 in Sulphur.

While the sessions are closed to only members because of sensitive medical information, local volunteers are needed to help with the event.  They would serve by playing with the children so their parents could sit down with medical experts.

If you want to be involved or sponsor any of the weekend events, click here to connect with Kristen Nazworth.

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