Online fundraiser Nov. 3-6 for Lynnwood boy with rare medical condition

Jacob Tyler

High Fives for Stacey will host an online auction fundraiser to help raise money for a 4-year-old Lynnwood boy with a rare medical condition. The fundraising event will take place from Nov. 3 at 9 a.m. until Nov. 6 at 9 p.m.

There will be 100-plus items from 100-plus donors participating in the auction. The online auction can be accessed here.

Jacob Tyler was born with a condition where the band connecting the two hemispheres of the brain, the corpus callosum, is almost completely missing. This and other diagnoses are the result of missing genes in the embryo during pregnancy that result in severe developmental delays.  Fewer than 50 children internationally have been documented with this genetic condition, which is called 3p deletion syndrome.

Jacob’s parents, Connor and Lisa Tyler of Lynnwood, were taken by surprise with Jacob’s diagnosis because the genetic tests performed were not intended to catch such a rare condition. Although Jacob is in numerous therapies and is monitored by more than 16 departments at Seattle Children’s Hospital, the Tylers’ hope to enroll him in an intensive therapy program in The NAPA Center in Los Angeles. With help, he will be able to reach the next developmental level much faster –three weeks rather than a year of therapy.

However, the high cost is not covered by insurance. High Fives for Stacey — a nonprofit organization serving families with special needs — has taken on the Tyler family’s case and has planned several fundraising events in the Seattle area so both children may receive intensive therapy at The NAPA Center. 

 

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