Seven-year-old Landon is full of life, full of energy, and full of personality.
"He's so active, and he loves to help in any way that he can. He loves being with other kids. He loves his brother and sister," said Kristen Nazworth, Landon's Mom.
It’s is a life Kristen and her husband Nathan Nazworth couldn't have imagined when Landon was born, and they learned the devastating news.
"He wouldn't talk, he wouldn't recognize us. He would just be there, physically just be there, without any emotion or anything," said Kristen.
The diagnosis was Chromosome Deletion 9P Minus Syndrome, or Alfi's Syndrome.
There's 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 1970's textbook, had one paragraph and they said this is all I can tell you about this syndrome your son has. And 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," said Nathan.
There is medical care that can improve the life of a child with Alfi's Syndrome, but doctors say that because of the mental disability that comes with the condition, a child benefits greatly from love and support of a family. It’s also important to seek support from groups for parents of affected children.
Even in their grief over the news of this medical condition, the Nazworths could see a light in Landon.
He learned sign language at an early 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 just brings so much joy to me," said Nathan.
This progress hasn't 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 the Chromosome 9P Minus Network, a support group that connects them to other families around the world facing the same trials and triumphs.
"We can talk to them about it. Get a better understanding of how they are handling it. We can give them ideas of what we do," said Kristen.
The Nazworths hope other families can meet Landon and see what's possible, despite the serious diagnosis.
"He is just joy," said Kristen. "He brings joy and happiness. To hear him laugh and to see how happy he is, it's just a joy."
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