The Reason Behind Our Mission: Teresa - Rare but Unique!
Over the past fifty-two years, my family and I have watched my sister, Teresa, beam like a ray of sunshine brightening up our life since the day she was born. There were three of us growing up; myself, my sister Teresa, and our younger brother Donald. Teresa and I were three years apart in age leaving us to spend ample time together. Throughout those early childhood years it never crossed my mind that she was any different than my brother or I. Both my parents and extended family treated her the same exact way as they treated myself or Donald. The main difference that always stood out to me was the fact that I was older than her. We had our typical sister relationship, small tiffs, silly moments, and even teasing one another at times. There were instances I recognized that she didn’t talk as much as I did and it did take her longer to walk, though that never stopped us as a duo. If I was in a cute outfit with pigtails, Teresa was dressed the same. Anything I did, she did too!
I was around six years old when I first noticed there was something different about my sister. There was a girl within the neighborhood who made comments about Teresa, poking fun at her or pointing out her differences. These moments made me enraged. They filled me up with such anger leading me to transition from not only her sister but her defender and protector. From that moment until this present day, I continue to wear that badge with great honor. No one would come between the dynamic duo! This mindset carried with me throughout every phase of my life, that included any friend’s who displayed the smallest but of discomfort being around her. If you were not down to ride with the two of us, then you could consider yourself off our bus at the nearest stop. My sister was a massive part of my world and I had no interest in further developing my friendships with those individuals if you weren’t interested in caring about her.
It was not until I was in college that my family discovered the specific diagnosis for the disability that Teresa had. At the time I was working at Western Psychiatric Hospital in Pittsburgh Pennsylvania as a Unit Clerk and was informed there was a seminar being held for individuals with disabilities and characteristics for what is known as Rett Syndrome. My family and I took interest in learning more about the seminar, in which we realized every characteristic described aligned with characteristics of what we as a family navigated with Teresa. My family and I attend this seminar at UPMC Children’s Hospital of Pittsburgh in Pittsburgh, Pennsylvania. Upon arrival to our surprise there were a multitude of families with disabled children and adults, experiencing similar challenges that we faced with Teresa. We left that seminar with further knowledge and recognized Teresa fit the diagnosis of Rett Syndrome. Today we now know from a young age my sister developed a rare genetic neurological disorder called, ‘Rett Syndrome' which occurs almost exclusively in females and leads to severe impairments overtime.
From that day forward, we were provided with a name for the disability that Teresa was diagnosed with. Though the love, affection, and support that she continued to receive from myself and my family was no different than before. I fully believe the compassion and sustenance our family has and the help of God are the two main reasons that Teresa is still with us today at age fifty-two! As time has passed we’ve come to learn most individuals who experience Rett Syndrome have a life expectancy of forty years or so. She has defied the odds and continues to amaze myself, my family, and all others who know about Rett Syndrome every single day.
As time has progressed, Teresa’s use of her vocals and limbs has become limited though we as a family learned all of her social cues, noises, and gestures to understand her communication styles. As Teresa is aging my parents are too, though they still to this day care for her while providing her with the best quality of life within the circumstances she has. Over the past year or so Teresa has slowed down a bit, forcing them to wheel her around in a wheelchair or helping her eat as the restricted use of her limbs has increased significantly. Though her capabilities have decreased she is a true fighter who constantly brightens up our world every day!
As a small business owner I’ve created apparel and accessories to, “Express your Inclusion, Be Empowered.” Though it’s not just about our products, it’s about the impact each sale contributes toward our International Rett Syndrome Foundation, IRSF. At Essentially Toni, it is our mission to raise awareness about Rett Syndrome while financially contributing to the cause for individuals like my sister and their families. Our partnership with IRSF will propel further research while supporting individuals and their families with this disability.
Growing up it was a desire for my sister and I to share typical sister moments together — daily gossip, shop until we drop, laugh uncontrollably, and even lean on one another during challenging times. Although our story unfolded differently than expected, I am honored to raise awareness on Teresa’s behalf through her impeccable story while giving back to other families with individuals who are navigating Rett Syndrome.
I want to give a very special shout out to my parents to thank them for their unwavering love, endless support, and utmost care they continue to provide for my sister and our family. As this road has been far from easy to travel down and a quick thank you is not enough, I am forever grateful for all they’ve done for her throughout her life. We are lucky to be graced with Teresa’s presence to this day because of them both!