Doing the Right Thing: Raising money for SOFT

NEENAH, Wis. (WFRV) - When it comes to chromosomal disorders, down syndrome is the most common.

But, there are more than a dozen others that can lead to serious medical challenges for families.

A local family is trying to raise awareness, money and grow support for people impacted by Trisomy disorders.

They're raising money, through a bowling fundraiser at Classic Lanes in Neenah, for an organization called SOFT.

"SOFT is an acronym it stands for support organization for Trisomy 18, 13 and related disorders" explains SOFT's local Chapter Chair, Ann Hameister.

Trisomy 18 and 13 are much more serious than the more commonly known Trisomy 21, or down syndrome.

"We found out at my 6th month of pregnancy and our world kind of turned upside down" Hameister says talking about her daughter. They were told she would likely not reach her first birthday. Only about five percent of kids with Trisomy 18 or 13 do.

"She came home two days after she was born and we were not given much hope at all" Hameister explains. They found hope and help through SOFT.  

Hameister explains "We were connected with them early on in her life and it has made a huge difference to be able to talk to other families who understand what you are going through, lots of resources, so they have been a great".

Now Ann is the chapter chair for Wisconsin. She has a success story to tell. "My husband and I are very blessed that Ella will be turning 16".

Her life hasn't been without challenges. Ella has had numerous surgeries, hospital stays and special therapy. She and her parents have found strength through SOFT.

"It is an extended family for anyone who has a child born with Trisomy 18 or 13" Hameister says.

They are excited to be hosting the annual national soft conference in Wisconsin this summer. The upcoming fundraiser at Classic Lanes will help lower the cost for families to attend.

"Somebody has to reach out and help the smaller causes that do not get recognized" says Carrie Paine who is coordinating the benefit.

Paine and her classmates from Sacred Heart use their yearly reunion to give back, this year to SOFT. "Ella gives us so much more than what we really give Ella. She shows us to smile every day. Shows us to appreciative for what we have.

The SOFT fundraiser is for all ages. It is a 9 Pin Jamboree bowling tournament on February 25th.

You can contact Classic Lanes for more information at 920-722-1998.

Register for the bowling tournament here: https://koshadult.yapsody.com/event/index/59486/soft-family-friendly


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