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Grateful Berlin family seeking donations for CHaD half marathon

Owen Stewart with his parents Lisa and John and big sister Amber Photo by Debra Thornblad. (click for larger version)
September 26, 2012
By Debra Thornblad

Contributing writer

BERLIN - Owen Stewart's life is a miracle. A CHaD miracle. And grateful parents John and Lisa Stewart of Berlin want to help CHaD work more miracles.

They are hoping to sign up pledges that will help them raise $1,000 for the CHaD Hero Half Marathon and Repcord 5K.

Own is a happy and healthy four-year-old that will have a full life. But that wasn't always certain.

Owen was born pre-mature and at a six-month checkup local doctor Brian Beals noticed his head wasn't shaping exactly right. Still, because he was a preemie and sometimes it takes a little longer for them, he advised them to wait a little longer.

When it still wasn't right at 12 months, Dr. Beals sent them, that day, to Androscoggin Valley Hospital, for X-rays. He was diagnosed with Craniosynostosis, a condition that affects about one in 2,500 babies, mainly, although not exclusively, boys.

It is congenital (present at birth) and causes one or more sutures in a baby's head to close earlier than it should, meaning skull bones fuse together as a baby, not allowing a skull to grow as it should. Normally a skull continues growing until about age five.

Since the age of 15 months, Owen has undergone three reconstructive skull surgeries. During the first surgery at 15 months, the top of his skull was opened up and rearranged to allow for brain growth.

At three years old the back of his head was cut into multiple pieces and reconstructed with plates and too many screws to be counted.

On Aug. 1 of this year, at four years old, Owen was the first child in this part of the country to have a distraction device attached to his skull. It is made up of titanium plates and rods that his parents had to turn with a special ratching screw driver three times a day that allows for new bone growth. They had to do this for two weeks.

This surgery was the roughest. Due to complications, Owen was on a respirator for two days and his blood pressure mysteriously went high for a few days. Doctors still don't know why.

Only 50 children in the entire country have had this surgery. Throughout his surgeries he's had to have numerous blood transfusions as well.

All of his surgeries took place at Dartmouth Hitchcock in Hanover. A teaching hospital, because he is the first child in the area to have the distraction device put in, when he comes back for checkups medical students come in to watch and learn.

He is scheduled for what they hope is the last surgery sometime in December. This surgery is to remove the various metal in his head. Approaching five years of age, his skull should be about the size it will be for life at that time. But there are no guarantees that more surgeries won't be needed.

His parents are convinced without CHaD, Owen would not be alive today.

"They have been so wonderful to our family that we would like to give thanks to them by helping to raise money for CHaD," his parents said.

The 7th annual CHaD Hero Half Marathon is being held October 21 in Hanover. They have chosen Owen to be the mile four marker on the course, a real honor for him.

The family is hoping to raise $1,000, which will be matched by the Positive Tracks Matching Grants Fund for another $1,000, for a total of $2,000.

Owen has his own webpage through CHaD, which has more information about his surgeries and at which donations can be made. A direct link to his webpage is (https://www.kintera.org/faf/donerReg/donorPledge.asp?ievent=1000571&supId=366296710)

If you would like more information you can reach John and Lisa Stewart at (603) 723-3755/6755 or email jstewart_4@yahoo.com.

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