Meet the Williams Family: Arkansas' Rett Syndrome State Family Empowerment Team Representatives
Jessica Williams is a nurse and mom of three. She reached out to Little Rock Family to share her daughter’s Morrigan’s journey with Rett Syndrome (RS). We wanted to know more about the disorder and how Little Rock families can support RS research and more.
Can you tell us about Rett Syndrome?
Rett syndrome is a rare genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
How did you become a State Family Empowerment Team Representative for rettsyndrome.org?
After Morrigan was diagnosed I wanted to know everything about RS. I contacted rettsyndrome.org (RSO) with the hope of connecting with fellow Arkansas families. Instead, I was able to connect with a family representative from Massachusetts. RSO had a list of State Family Empowerment Team Representatives for each state, however Arkansas did not have one.
After months of interviews and changes within the website, I officially became Arkansas’ Family Empowerment Team Representative on June 17, 2019! My hope is to start networks for all families in and around Arkansas. The networks would consist of the good clinics/doctors that are educated about RS.
How can Arkansas families help support efforts to spread awareness about Rett Syndrome? How can they help the efforts to find a cure?
Talk to everyone who will listen! That may be by doing a Facebook fundraiser, wearing a RSO t-shirt or updating your profile picture with a RSO frame! Visit rettsyndrome.org to learn more and connect with them on Facebook to stay up to date on events.
Right now, the San Antonio chapter of RSO is gearing up to host their annual Strollerthon to raise awareness and funds. Check out the event details here and plan to join them virtually on November 7!
Has the pandemic affected people with Rett Syndrome or Rett Syndrome research?
Yes! Everyone involved with RS has been affected one way or another. In our family we have kept in contact with a small circle of family members and canceled all medical appointments/ therapy sessions. Our other two children and my husband are doing virtual school from home, to limit contact with others.
Jessica Williams and her husband Paul have been married for 10 years. They have three children and live in Vilonia Arkansas. Their youngest daughter Morrigan has Rett Syndrome. She was diagnosed on September 22, 2016 by a neurologist at Arkansas Children’s Hospital in Little Rock. Paul is a full-time student at UACCM in Morrilton, and Jessica is a licensed practical nurse at Conway Human Development Center.