Nonprofit, Student Council Team Up to Combat Rare Genetic Disease

Second Dollar Denim Days will culminate Feb. 29; members of the community are encouraged to get involved to raise funds for research and awareness of Rett syndrome.

Lake Zurich-based nonprofit Two Hearts Rock is working in concert with the  Student Council to bring awareness to Rett syndrome, a rare and debilitating genetic disease for which there is no cure.

All proceeds from the Dollar Denim Days fundraiser will go toward advancing research of the disease, which robs young children diagnosed with it of both their verbal and motor skills.

The impetus for the fundraiser comes from the plight of 3-year-old Amelia "Emmy" Foster and her family. Emmy was diagnosed with Rett syndrome in the summer of 2011.

Emmy’s mother Colleen is a former teacher at Spencer Loomis, and school staff made Two Hearts Rock co-founders Kerry Hughes and Lori Butler aware of Emmy’s diagnosis and the difficulties she and her family have
experienced since receiving it.

In addition to mounting medical bills for physical, occupational, augmented communication and hippotherapy, there is also the extreme cost of a range
of specialists who have and will continue to be sought by the family to help their little girl.

There are a variety of medications Emmy’s parents have obtained for their daughter, but there are others they would like to use in their fight to improve her condition.  

“Emmy needs help with all of her daily physical activities. We need to feed her, dress her, help her brush her teeth and basically help her accomplish any physical task,” said Foster.

Emmy has learned to walk again since starting her physical therapies, but her speech has not returned.

“It is like she is trapped in her body, and because she was beginning to speak before her diagnosis, it is even more frustrating for her to try and communicate with us without being able to speak,” Foster said.

The Fosters are hopeful that research and awareness about the disease will increase through grassroots efforts such as the Dollar Denim Days initiative.

Foster says groups like Two Hearts Rock and the student council at Spencer Loomis help give her and her family hope that a cure will be found for Emmy and other children living with the disease.

“In addition to Rett syndrome, we have learned about so many rare genetic diseases that pharmaceutical companies just don’t work to find cures for at this time,” said Hughes. “We want to bring awareness to this because parents of children diagnosed with it are pretty much on their own right now.”

Foster said the disease affects young boys and girls, but because it affects the X-chromosome in the body and males have only one, their mortality rate is extremely high and most succumb to the disease by the age of 5.

Since females have two X-chromosomes, Foster said the amount of time girls can survive with the disease is longer based on limited research that has been done — but the prognosis for little ones like Emmy remains unclear.  

“Everyone thinks they won’t have the worst-case scenario because statistics are so low. When Emmy was diagnosed, I went to research Rett syndrome, and there was nothing of any real substance I could find out there about the true prognosis,” Foster said.

“The hardest thing is to watch her lose her skills. She doesn’t attempt to use words, she can’t play with her toys like she used to; we need to help her to just sit down and rest, and we have to read her eyes because her body isn’t able to do what she wants it to,” Foster said.

Foster added that according to the minimal research out there, deaths of children who continue with the progressive disease typically occur from choking or other situations due to low lung function.

Denim Dollar Days

Students, community members and businesses in the Lake Zurich area are encouraged to purchase denim ribbons that have been assembled by the Spencer Loomis Student Council over the last several weeks.  

The ribbons can be purchased for $1 each starting Feb. 21 and worn along with jeans on Feb. 29, which is World Rare Disease Day, to put a spotlight on Rett syndrome and other rare genetic diseases.

How You Can Help

  • To learn how you can be a part of the Dollar Denim Days campaign and to purchase denim ribbons, please contact Kerry Hughes at 1-847-204-2336 or email at kikihughes847@comcast.net, or Lori Butler at 1-847-567-9599 or email atlbutler615@yahoo.com.

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