Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome

In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT.  Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her!

By Kathleen Schassler, The Middletown Press

Roslyn_2

One of the dogs Roslyn Helmedach met, named Brie (left) takes a nap with her mother recently at the East Coast Assistance Dogs training facility, located in Dobbs Ferry, NY. Courtesy Lori Helmedach.

 

“Neighbors in Middlefield are joining to support resident Roslyn Helmedach in her quest for a service dog.

The daughter of Middlefield volunteer firefighters Ken and Lori Helmedach, Roslyn, 16, suffers from a rare genetic disease called Ehlers Danlos Syndrome, an inherited connective tissue disorder.

In addition, Roslyn also suffers from postural orthostatic tachycardia syndrome, anxiety, chronic pain and several other issues that come along with Ehlers Danlos Syndrome, according to Lori Helmedach.

“With an unsteady gait, Roslyn falls frequently and sometimes uses a wheelchair, the Press has previously reported.

Roslyn “can pass out at any given time,” making the Cochingcaug High School junior fearful of being alone.

With its Rally for Roslyn fundraiser, the family so far has collected more than $15,000 from local organizations and individual donors, including Roslyn’s teenage friends. Some have offered cash from part-time jobs. A gofundme account online also reflects contributions made offline.

Now groups in the community are banding together to raise money with a pasta dinner and silent auction on Saturday, March 28.

Tickets cost $10 or $25 per family for the event scheduled from 4:30 to 8 p.m. at the Middlefield Federated Church, 402 Main St. Tickets can be purchased at the Middlefield Fire Department or by contacting Anne Malcolm at anneemalcolm@hotmail.com or Lori Helmedach at firefightergrandma@yahoo.com.

Donations can also be made to a Rally for Roslyn account at Middlefield Liberty Bank.

“Ann and Alice Malcolm are the most amazing cooks around,” said Helmedach, assuring all that the dinner will offer tasty fair and fun.

Spearheading the event is neighbor Elma Elder, a member of the town’s Democratic committee.

Other committee members have also stepped up to help, along with volunteers from the Federated Church, the fire department, and other groups now being invited to get on board, according to Elder.

“We’d like to raise about $5,000,” said Elder. “It’s going to be a reach.”

Donation jars will be found around town, along with information to help educate others about Ehlers Danlos Syndrome, according to Helmedach.

Silent auction items are now being sought, and Elders encourages residents to check their attics for hidden treasures that may fetch a good price for a great cause.

“Roslyn is such a sweet girl. To look at her, you’d think she’s fine,” said Elders. “Then you learn about this disease and how it impacts all the connective tissue in her body.”

At Roslyn’s urging, the family connected with Educated Canines Assisting with Disabilities, a nonprofit organization that provides service dogs to the disabled. ECAD has training facilities in Connecticut and New York, and has placed assistance dogs in more than a dozen states.

The family covered the initial $500 deposit for the interview, and passed its first benchmark payment of $10,000, which allows Roslyn to attend an intensive two-week training session with her service dog in Dobbs Ferry this spring/summer.

The family must raise an additional $20,000 to cover all the costs. This includes a $10,000 fund set aside for costs if the service dog faces any health emergency.

“Being the daughter of volunteer firefighters, Roslyn can be left alone at a moment’s notice,” said Helmedach. “This dog will be life-changing for her.”

Her daughter is a fighter who has many ups and downs, said Helmedach, who also has three other children at home.

“There are days when she should not be walking through the school halls, but she does it,” Helmedach said.”

For more contact Anne Malcolm at anneemalcolm@hotmail.com or Lori Helmedach at firefightergrandma@yahoo.com.”

This is a great resource for anyone in need.  Service dogs can be very helpful for those with Ehlers-Danlos Syndrome and other disabilities. 

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  • Tracey

    I sincerely hope this will happen for this young lady. My dog was trained to help me around the home. He has cat issues so would not have passed the exam to become a full assistance (service) dog. Just having him gets me out of bed when I am in so much pain I’d rather stay there! He knows when I’m tachycardic (never trained in him, he just knows) and will stop me from standing or even being helped to stand, he knows when my neck is causing migraines, he opens and shuts doors and cupboards, picks up all manner of objects even takes off my shoes, socks and clothes. He was trained using the clicker/ positive reinforcement and the trainer from the charity trained me to train him as he knew he was going to retire and knew my situation was progressing so when I need my dog to help me with something new I can teach him. He is very intelligent and loves to help.

    All dogs have the capacity to learn to a greater or lesser extent so if there are charities/ organisations near to you that offer assistance/ service training for pet dogs and your dog passes the initial assessment it can be done. There are people who have trained their own dogs to help them if the formal route isn’t a requirement. Training my dog gave me a sense of purpose at a time when my condition progressed to a point of severity I’d never imagined. I very, very rarely have any depression or sadness because of my dog (and my wonderful partner- he does the twice daily walks I can’t do). Those days I am well enough to take him out in my powerchair are amazing, watching him happily trot next to me. I might not get out alone with him for months on end but each time that walk stays with me paw step by paw step. Diamonds are not this girls best friend, he is my best friend and I’d urge anyone to consider a service dog if they need one.

    Best of luck Roslyn, I will be thinking of you

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