Illinois Abilities: Holly Usrey-Roos fighting for awareness of Fragile X

Whether it's helping raise money, speaking to members of Congress, or taking care of her two special needs children, Holly Usrey-Roos dedicates her life to supporting the National Fragile X Foundation and fighting for awareness.

article by Hannah Schrodt for the Canton Daily Ledger - Canton, IL | Jan 15, 2015

Holly Usrey-Roos

Whether it’s helping raise money, speaking to members of Congress, or taking care of her two special needs children, Holly Usrey-Roos dedicates her life to supporting the National Fragile X Foundation and fighting for awareness.

Since her son’s Fragile X diagnosis about eight years ago, the Canton woman went from unexpectedly discovering her children have an intellectual disability to now traveling to Washington, D.C., once a year to advocate support for funding.

However, the Usrey-Roos’ journey hasn’t been easy and she shares her story so that others may better understand those with Fragile X and similar disabilities.

DIAGNOSIS

Usrey-Roos, who has a background in early childhood, noticed something was developmentally wrong with her son, Parker, when he wasn’t speaking or able to use fine motor skills by the age of three years.

Trips to several different developmental pediatricians yielded the same result: the doctors believed Usrey-Roos to be an overly nervous first-time mother and Parker to be healthy. Yet, the family still appeared to have doubts as Usrey-Roos’ mother, who is a nurse, attended a genetics conference and collected information on Fragile X, a genetic condition that affects the X chromosome.

Parker was officially diagnosed with the condition in March 2003, just shortly before his fourth birthday. Usrey-Roos’ 7-month-old daughter, Allison, was also diagnosed with Fragile X a few months later.

Both Parker and Allison are considered to have the full mutation of the gene that causes Fragile X, meaning that they have Fragile X Syndrome.

There are Fragile X-associated disorders that occur due to pre-mutations of this same gene, but its carriers do not have Fragile X Syndrome, though they may suffer from medical issues. Those with these pre-mutation gene may eventually pass Fragile X Syndrome onto their children.

According to Usrey-Roos, the family had no idea they were carriers for the condition before Parker’s diagnosis. She noted that they have since traced the gene back six generations, with Usrey-Roos and her sister both being carriers.

In Parker and Allison’s case, both have trouble with severe anxiety and sensory issues. Parker experiences additional issues with aggression, anger, speech and fine motor delay because he is a male and males are more affected by the condition as they only have one X chromosome.

Throughout the years, the children have been involved in various drug treatment trials and regularly participate in research projects.

Usrey-Roos says that Parker, now 15, is academically performing at a second grade level while Allison, now 12, is more independent and is in sixth grade. Both are involved in extracurricular activities — Parker with Special Olympics and Allison with volleyball, Girl Scouts, horseback riding and band — and Parker spends half of his time in school in regular education classes and the other half individual instruction.  Allison takes all regular education courses and does not need accommodations. 

Yet, Usrey-Roos notes that while Allison is more independent than Parker, she still has challenges with anxiety and extreme shyness.

ADVOCACY

After discovering Parker has Fragile X, Usrey-Roos reached out to the National Fragile X Foundation and has been helping support the organization ever since. In 2006, three years after Parker’s diagnosis, she founded the Central Illinois Fragile X group, which helps raise money and awareness for the condition in the area. The group also holds various awareness and educational events.

Around this time, Usrey-Roos also started becoming involved in the National Fragile X Foundation Advocacy Day which is a two-day event in which members of the Fragile X 

community go to Washington, D.C. and speak to Congress members about the cause.

Usrey-Roos said the first day includes training for parents and families on how to tell their diagnosis stories, express what the foundation is requesting and the ways Congress can help. The second day is spent in meetings with members of Congress and other important representatives.

“It’s a really incredible and very empowering experience for families,” Usrey-Roos said. “We’ve seen a lot of great things come from it, a lot of relationships being built and funding coming through for Fragile X.”

Usrey-Roos noted that they have campaigned for the recently passed the Achieving a Better Life Experience (ABLE) Act, which allows tax-free savings accounts to be available to individuals with disabilities.

In addition, Usrey-Roos has also worked with State Rep. Michael Unes (R-91st District) to have July 22 declared as Fragile X Awareness Day in Illinois. She also said she meets with Congresswoman Cheri Bustos (D-IL 17) and Congressman Aaron Schock (R-IL 18) at the annual advocacy day event to discuss funds for Fragile X.

Usrey-Roos now co-runs the Center Illinois Fragile X group and works as a community support network program manager for the National Fragile X Foundation.

Usrey-Roos says one of her biggest goals is for others to understand Parker’s condition, as there are times Parker can become overwhelmed at public places and act out.

“One of the things that’s really important to me is that people don’t judge other people’s children or other people’s family based on what the child is going through because you don’t know,” she added.

Usrey-Roos also works hard to make sure Parker and Allison will be prepared and as independent as possible for when she can no longer be there for them.

“I want the same things that every other parent wants,” she said. “I want them to be happy, productive members of society.”

CELEBRATING THE ‘INCHSTONES’

Being the parent of a special needs child isn’t easy, and Usrey-Roos noted the importance of celebrating the small accomplishes in the child’s life, which Usrey-Roos calls the ‘inchstones’.

While other parents celebrate milestones such as their children learning to drive a car or attending prom, Usrey-Roos said she has celebrated her children being able to do those others take for granted, including walking, talking and being able to write their own name.

“It’s easy to get overwhelmed when your child has a disability,” Usrey-Roos said. “I think the more you can step back and appreciate the other things that people take for granted, the easier it is.”

Yet, she added that Parker and Allison also enjoy activities that other kids their age do, including going to the movies or swimming.

“While there’s challenges, especially with their anxiety and sensory issues, more than anything we have a great time,” Usrey-Roos said. “We have good days and we laugh a lot and there’s a lot of I love yous and hugs and smiles.”

She encourages those who are parents of a child with an intellectual disability to be their child’s voice and speak out if there is an issue.

Usrey-Roos also writes a blog during her free time on her experiences at http://itswhoiam-fx.blogspot.com.

http://www.cantondailyledger.com/article/20150115/News/150119665#ixzz3OzmwfyXb