Jesse Finds Support For Rett Syndrome In Art And Community

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When Jesse Randol began to notice that her then-one-year-old daughter, Ruby, was missing several developmental milestones, she and her husband began to grow concerned. After meeting with a pediatrician for a skeletal evaluation and later a neurologist, Ruby was diagnosed with Rett syndrome.

The disorder is rare and only affects one in 10,000-15,000 girls worldwide, but the symptoms can be severe. Ruby is unable to walk independently and is essentially non-verbal. But despite the daunting diagnosis, Jesse and her husband created a quality treatment plan and support system that has not only offered them invaluable guidance and resources, but also enabled Ruby (now age 7) to make remarkable progress in the years since.

“We sent an e-mail out to about 100 family and friends explaining what happened, how we were feeling and what they could do to help,” said Jesse. “You’re putting this private thing out in the open, but it helped us in letting people know how they could support us. All you want for anyone is to have them feel loved and included.”

Ruby now regularly gets a variety of treatments including physical, speech and occupational therapy. Jesse also notes that myofascial release and craniosacral therapy sessions have helped manage her daughter’s symptoms of Rett, while changes in her seizure medication have led to her becoming “increasingly present” and aware of her surroundings.

“The craniosacral therapy helps because she suffers from chronic migraines due to the tightness in her cranial plates, and the myofascial release helps stretch her out because she suffers from scoliosis. She’s now starting to bend her knee to initiate steps,” said Jesse. ‘You do the stretching because you want her to maintain her range of motion and improve her quality of life so that she can do things like stretch her arm and reach for a toy. Swallowing has become easier for her as well. It used to take me 90 minutes to give her medicine each morning, but now it takes 20.”

Ruby and Jesse have also benefitted greatly from Ruby’s aquatic therapy sessions with Ailene Tisser, a physical therapist and the co-founder of Swim Angelfish. Not only has Ruby gained more confidence with her movement, but the supportive environment helped shift Jesse into a more positive mental state when addressing Ruby’s disability.

“Aileen has worked with tons of kids who have severe disabilities, so instead of focusing on the things Ruby can’t do, she celebrates the things she can do,” explained Jesse. “Aileen has connected us with other people and resources to help us feel like we’re not the only ones going through this. You need to surround yourself with the people who will let you know that it’s going to be okay. Our friends understand that we just celebrate everything.

But while the therapy sessions are important for Ruby, Jesse believes it’s just as important for her to enjoy regular time with the family and friends. With the help of donations from people of her community and friends back home in Maryland, they recently purchased a sled and bike that Ruby not only enjoys using, but has allowed for crucial social experiences with her peers.

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“We love being outside as a family, but the sled and the bike have also helped her with other kids in the community,” said Jesse. “A lot of the awkwardness comes from not knowing how to engage with a child that has a disability or an illness. Now the kids in our community see Ruby in her sled or on the bike and laughing and it’s a normalizer. It’s a way for her to participate.”

Jesse has also found ways to integrate with the Rett syndrome community to gain the support she needs. Instead of utilizing traditional support groups, she has developed a passion for fundraising in order to help raise awareness for research and ultimately find a cure for it.

Jesse’s sister and several friends got together in 2012 to start a Maryland fundraiser for Ruby to raise funds to reverse Rett Syndrome. The 5th annual Art for Ruby was held this past May and raised $150,000 for research, totaling over $800,000 for the Rett Syndrome Research Trust since its inception. The Randols also co-chair Reverse Rett NYC every fall with several other families and friends; all of whom are determined to fund research focused on finding meaningful treatments and an eventual cure for Rett Syndrome.

“Seeing how people responded to Ruby has brought so much love and softness to how I see the world,” said Jesse. “Even the process of fundraising is helpful for me. I know we’re doing something that will not only benefit Ruby, but potentially so many other kids as well.”