Whitfields face toughest battle off the ice

by Beth Alderson || AHL On The Beat Archive

Alstyn Whitfield and her parents are helping to raise awareness and understanding of Down syndrome

Playing professional sports requires extreme levels of strength and perseverance. As a player for the Peoria Rivermen, Trent Whitfield takes body checks and hits in his daily work.

But there was no preparing him and his wife for the strike they received last August.

Until August 13, Trent and Colleen Whitfield knew nothing about Down syndrome. Then the couple gave birth to their daughter Alstyn. Their baby girl was diagnosed with Down syndrome at birth.

Down syndrome is a condition in which an extra chromosome causes the development of a child to be delayed. Often, it leads to mental retardation. No one knows why Down syndrome occurs, and there is no way to prevent the chromosomal error that causes it.

Early in Colleen’s pregnancy, a sonogram gave her a marker for Down syndrome, telling her that her child was at risk. Upon receiving this information, the options available to the Whitfields were to carry the baby full-term, despite the possible diagnosis, or to have an amniocentesis.

The amniocentesis is a test that uses a needle to test the amniotic fluid that surrounds the baby in the uterus. It checks for genetic disorders and chromosomal abnormalities, such as Down syndrome. The amniocentesis would give the parents the definite status of their child’s health but at a price: the possibility of a miscarriage.

“We struggled to become pregnant our first time,” said the couple, remembering their hardship. When they first decided to start their own family, the Whitfields fought for conception. They faced several miscarriages. Finally, their son Colton was conceived through in-vitro fertilization.

Together, they came to their decision regarding the test.

“We wouldn’t have terminated either way, so we decided against the amniocentesis,” they recalled.

After the initial shock of Alstyn’s diagnosis, the Whitfields began researching Down syndrome. A lot of their resources came from the Internet. They had easy access to plenty of information and message boards, all of which helped educate them on what having Down syndrome really means.

“They help you to see how great these kids really are and how much love they have to give,” said Colleen. “It’s therapeutic to read and learn.”

Beginning their own campaign to raise awareness was the obvious next step for the couple.

“Trent’s [fame] is a great opportunity,” said Colleen. “His publicity from the team gives us a chance to raise awareness in the community.”

For the holiday season, the Whitfields bought about 250 ornaments using their own money. Colleen painted them by hand, and during Rivermen practices, Trent would bring in groups of ornaments for the team to sign. For $20, fans and supporters had the chance to buy an ornament signed by all the Rivermen and to donate to a good cause.

The ornaments were sold at Carver Arena during Rivermen games and on the team’s website, www.rivermen.net. Supporters were also able to make donations without purchasing an ornament if they wished to support the National Down Syndrome Congress.

“All of the money raised, including the cost of the ornaments will be donated to the National Down Syndrome Congress to aid in their campaign to promote acceptance and awareness of these beautiful children,” said Trent.

The National Down Syndrome Congress (NDSC) is beginning its 2008 campaign: “We’re More Alike Than Different.” The 2008 campaign has set a goal of raising $500,000 and is determined to raise awareness and create fair and equal opportunities for all those with Down syndrome. Every donation made to the NDSC will be doubled by a matching grant.

“The campaign is to show that people with Down syndrome are just like everyone else,” explained Colleen. “They have jobs. They go to school. They have love to give. It just takes them longer to develop.”

More specifically, the goal of the campaign is to create the funds to produce public service announcements and publications to distribute more information. The NDSC hopes to feature self-advocates spreading the message that people with Down syndrome are more like everyone else than they are different.

The couple said that their mission has been more successful than they imagined, in more than just the financial aspect.

Through their project with the ornaments, Colleen and Trent found the opportunity to talk with many others who have family and friends with Down syndrome.

“Down syndrome parents are an amazing community,” they stated gratefully.

The Whitfields also found much generosity from the Rivermen office. “They’ve been amazing. The staff has helped us to get publicity on their website, the newspaper, and on television,” the two raved.

Colleen’s surprise from all of the recognition their campaign gained was apparent.

“I’ve been stopped by random people in the mall who recognize me from all of the publicity we’ve gained,” she said.

The Whitfields paused to think when asked about what advice they would give to parents who have learned their child has Down syndrome.
“That’s hard. We’re still getting advice because we’re so new the Down syndrome community,” they admitted. “The most important thing is to get involved early. Find a local chapter of the NDSC and try to meet other people in similar positions.”

Alstyn is already involved in an early intervention program. These programs are available for all children with Down syndrome, and they facilitate development both physically and mentally. Kids can begin soon after birth.

For now, the Whitfields are happy with the progress they have made in the Peoria community. They haven’t thought about any specific plans for the future, but they will continue to fight to bring the best life possible to their daughter.

In the past, children born with Down syndrome were considered different. They were isolated and excluded from regular activities. Today, these special children are being embraced by their families and communities. They are successful, contributing members of society.

“Parents are the strongest advocates for these children,” the Whitfields agree. “They are fighting for their rights.”

And as the Whitfields and the rest of the Down syndrome community continues to raise acceptance and awareness throughout the world, it is their hope that everyone will come to see that people with Down syndrome really are more alike than they are different.