Fundraiser planned for Hawarden great-grandson

Posted August 8, 2013 at 3:39 pm

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By Julie Ann Madden

To look at him by himself, he looks like a normal seven-year-old. But stand him next to another child of that age and one can definitely see a difference, said Marilyn Wheelock of Sioux City, affectionately about her grandson.

Lincoln Wheelock suffers from Fibrodysplasia Ossificans Progressiva, commonly called FOP.

This disease is a gene anomaly whereby the gene that creates growth in fetuses in utero fails to shut off and continues to create bone growth after birth.

When Lincoln’s body receives trauma such as swelling from a bump or bruise, his body wants to turn those bumps and bruises into bone masses.

“The gene creates another skeleton internally,” explained his grandmother. “Lincoln loses mobility with each bump and bruise.”

There are only four young men diagnosed with FOP in Iowa and only 300 nationwide. About 700 are known to have FOB worldwide.

There is no cure but research is being done by Dr. Fred Kaplan of the Univeristy of Pennsylvania and his team, which discovered the gene causing this.

Because so few have this disease, it is known as an “orphan disease,” meaning research dollars are mostly raised through family members of FOP victims.

These fundraisers are really important, said Wheelock, stressing the importance of finding a cure for not only Lincoln but the other children who have this gene anomaly.

Lincoln’s family and friends are hosting a “Lincoln’s Legacy” fundraiser to raise funds for searching for something to “turn off” this gene.

The fundraiser will be held from 5:00 – 9:00 p.m., Friday, Aug. 16 at the Church of the Nativity Parish Center, 4242 Natalia Way in Sioux City.

The fundraiser includes a catered meal by Central Catering of Hawarden from 5:00 – 7:00 p.m.; and a silent auction and prize drawings from 6:00 – 9:00 p.m.

Advance tickets are $10 and can be purchased by calling 712-490-1171. Tickets, $12 each, will also be available at the door.

Wheelock uses the analogy of a dripping faucet. In some children, this gene “faucet” drips slowly and in others it drips rapidly, causing faster bone growth. For instance, some like Lincoln are still mobile while others are wheelchair bound.

Prevention of body trauma is the only treatment at this time, said Wheelock. “Trying to keep FOB kids safe — keep them from falling and hurting themselves but yet we want to have them live normal lives.”

Lincoln is the son of Trisha and Lee Gambaiana of Des Moines. He has one brother, Hudson, age 5.

Their grandparents are Doug and Marilyn Wheelock of Sioux City and Robin and Mark Nilson of Kirksville, MO. Lincoln and Hudson are the great-grandsons of Paul and Dixie Gambaiana and Larry and Peggy Nilson, all of Hawarden, and Betty Wheelock of Sioux City.

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