I always say that I am the luckiest person alive because I am Kristi’s little sister. Her influence lives on today through the blessing of the work we do at Rett University, helping to bring the community together. Kristi was 10 years older than me and lived with Rett Syndrome for 51 years. She taught so many so much without ever saying a word. Our family did not know the words Rett Syndrome until Kristi was 21. Before that, we were searching for a community that understood what we were living and feeling daily. After the diagnosis of Rett Syndrome, we still searched. With the growth of the internet and social media, our community grew, and we found others who understood the triumphs and trials of Rett. It has been so comforting to find others who get it.
In 2015, I went to a Rett University seminar because my goal was to talk to my big sister. I wanted to know what was going on in that brain of hers, especially when she got that mischievous grin on her face. Listening to Susan, seeing her work with older girls, and meeting other families at the training was so enlightening. To hear Susan say “it is never too late” sent me on a mission to talk with my sister.
Right after Kristi’s 50th birthday, we arranged a 3-month trial with a Tobii. There are no words to describe watching Kristi use the device, tell me off (which I deserved), and tell me “I love you”. I had become a Special Education teacher, but hearing Kristi talk renewed my desire to be part of the Augmentative Communication (AAC) community. I told Susan when I met her that I wanted “to be her” when I grew up.
Fast forward to now and the community I work with as a Rett U coach. Kristi taught me everything I know and lead me to this journey. I would not be me if it were not for Kristi’s influence. Losing her in 2016 was the hardest thing I have ever gone through, but again, our community stepped up and helped me through. This is what we do as a community… find ways to help and support.
“Community means strength that joins our strength to do the work that needs to be done. Arms to hold us when we falter. A circle of healing. A circle of friends. Someplace where we can be free.”
In April, I received a message from Preethi, a mom in India, who was looking for support for her daughter Liya. She was very interested in starting Liya’s communication journey using soft tech options. Around the same time, I started working with Jiselle in Tennessee using her PRC device. What none of us knew at that time was how our paths would ultimately connect.
During one of our sessions, Jiselle’s mom, Jill, mentioned that they had started The Jiselle Lauren Foundation and provided support grants for families of special needs children. Jill and the Foundation were willing to support families outside of the US, so I quickly reached out to Preethi to let her know. Within weeks, the grant application was completed and approved, and today Liya in India has a Tobii with communication software in front of her. Her first word was “more” followed by “perfect”. Yes, Liya, we all agree, our community came together in a way that could not be “more perfect”.
From Liya’s parents…
We were blessed with a beautiful daughter 3 and a half years ago. Like every other parent, we had hoped for a perfect life, for our home to be filled with laughter and joy.
At 9-12 months, things began to take a different course. She was not achieving all the milestones as other kids did. Something was different, something did not feel right. From then began our struggle to find a diagnosis.
She was diagnosed with Rett syndrome, a rare genetic syndrome at the age of three. Oh, how we wished it were just a nightmare, and things would get better once we woke up. How we wished to get back the autism diagnosis instead of Rett. Our hopes sank day by day. The specialists who diagnosed Rett mentioned to enjoy and cherish the memories we had so far, as life would not be any easier. They did not seem hopeful in any way for a better future. Our heart sank, we grieved for the life we had hoped to have.
It took a while to get back on our feet, but we were determined to prove them wrong. We researched all the possibilities, and that is when we stumbled upon Rett University. Watching kids with Rett communicate, not just ask for what they want, but to argue, be funny, and share their thoughts like other kids of their age. And, seeing a Rett child do math was enough to lift our spirits and hopes high. We decided to make our own destiny, we chose to make a better life for her.
We are thankful to Kourtney from Rett U for introducing us to Jill and Bailey, the wonderful and inspiring couple, who in spite of having their share of difficulties in life are driven with determination and passion to support other special children and families in need. We are incredibly grateful to The Jiselle Lauren Foundation for giving our child hope for a better future, for giving her a chance to be able to have her own voice. Thank you so much for believing in Liya and us. We are also pleased to share that Liya will be the first child in India to use a Tobii eye gaze. We hope to bring about a change, share our experiences, and inspire other families in India to help their kids reach their highest potential.
Lots of love, Liya, Preethi & Adesh