Ryegate, VT - On August 10, 2025, Jenny Nelson of Ryegate Corner, VT, will celebrate her 75th birthday. This is, by all accounts, an incredible milestone; however, Jenny has asked not to have a “traditional” birthday celebration. In lieu of cards, flowers and gifts, her only birthday wish is the continued hope that one day she will have the pleasure of hearing her granddaughter’s voice. “It would mean the world to me to see her have a successful trial with the new possibility of finding a cure.”

Jenny’s granddaughter, six-year-old Eliza Pelletier, of West Burke, was born with Rett syndrome (RTT), a rare genetic disorder caused by a mutation on the x chromosome in a gene called MECP2. According to information published by the International Rett Syndrome Foundation, RTT affects one in every 10,000 to 15,000 females (drastically fewer males) and is often misdiagnosed early on as more well-known neurological disorders, such as autism, cerebral palsy, or epilepsy. Though RTT affects everyone differently, it is marked by deficits in body functioning and communication. Symptoms often include seizures, gastrointestinal issues, breathing complications, interrupted sleep, scoliosis, cardiac problems, and uncontrolled hand movements.

In addition to experiencing many of these symptoms, Eliza is unable to speak words for herself. Instead, she uses Eye gaze technology to communicate with her family, friends, teachers, and service providers. Eye gaze technology, used in Augmentative and Alternative Communication (AAC) devices, allows individuals with communication and physical disabilities to communicate by tracking eye movements. It basically replaces mouse or keyboard input with the user's gaze, enabling them to select choices, type messages, and communicate their needs by looking at pictures and icons on the tablet.

“There’s a sweet little girl inside. There’s somebody in there who’d like to have a nice chat with you,” remarks Jenny, who would love nothing more than to hear Eliza call her “Mimi.”

Betsey (Nelson) Pelletier, Eliza’s mother, the youngest of Jenny and Bill’s four children, agrees wholeheartedly. “Our daughter Eliza is truly a gift. Though Rett syndrome affects her ability to speak, we see her understanding in her eyes and feel her love in her smile—it lights up every room. She teaches us every day about resilience, joy, and the power of connection beyond words.”

While there is currently no cure for Rett syndrome, there are limited treatment options to help address some of its symptoms. Eliza takes prescription medication and receives different types of therapy, but there is hope for so much more.

Eliza’s family recently learned that she is eligible for two gene therapy trials currently being conducted in the United States. One of the trial sites is Boston Children's Hospital in Massachusetts. While the methods differ, both trials involve delivering the full copy of MECP2 genetic material, in a one-time injection, to the cells in the brain so that the body will start producing the protein essential for proper brain function. Benefits in the first phases of these clinical trials have been documented across many areas, including gross motor/ambulation, fine motor/hand function, and communication skills. Both trials are now in their second phases.

“We’re incredibly thankful for the progress being made through scientific research,” Betsey says. “It gives us real hope that one day Eliza, and so many others like her, will have the chance to live more independently and fully.”

To increase awareness and help raise funds to support research efforts, Jenny is inviting family, friends, and community members to a special event (rain or shine) from 1:00 - 4:00 pm on Sunday, August 10th, at her home located at 149 South Bayley Hazen Road in Ryegate Corner. “I love a big party. I want my 75th birthday to be very special, and we’ll have fun too!”

Guests can enjoy refreshments, a bounce house, and live music performed by Cousin Freddy and the Sap Buckets, a band featuring well-known local musician Brian Emerson. A slideshow will be set up to provide important information about Rett syndrome with an opportunity for guests to make a financial contribution to benefit Eliza’s fundraising efforts. Eliza, her parents, and her older brother, Braeden, will also be in attendance.

“We’re so grateful to my mom for opening her heart and home to help us raise awareness and support for Eliza. Her love for her family shines through in everything she does, and this fundraiser wouldn’t be possible without her strength, generosity, and unwavering belief in a brighter future for children with Rett syndrome.”

More information about Rett syndrome is available on the International Rett Syndrome Foundation website at http://www.rettsyndrome.org. Anyone interested in making an online donation in honor of Eliza can visit her fundraising page at https://give.rettsyndrome.org/CrushRett4Eliza. "Helping one person might not change the whole world, but it could change the world for one person” (Martín De León).

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