Thank you for awarding my daughter, Hailey Zak, the Sibling Scholarship from Rett Syndrome Angels. It was an incredible honor for her to receive this award, especially given our family’s deep history with the organization through our daughter, Alicia. Hailey received this scholarship in 2019 for her freshman year at the University of Hartford. The scholarship alleviated a significant financial burden, relieving college-related stress so Hailey could focus fully on her studies. It was a true blessing to our family. Most importantly, the scholarship made Hailey feel special and valued. Siblings in special-needs families often feel 'left out' or 'forgotten' because so much attention naturally goes to their sibling with Rett Syndrome. This award ensured Alicia’s big sister felt seen, supported, and recognized. For that, we are deeply grateful.

The Zak Family Ed, Andrea, Hailey and Alicia

When Chelsea got COVID a few years ago, she received a cute squishy from Rett Syndrome Angels. It brought me so much joy knowing that someone else truly cared about us. Sometimes this journey feels very lonely, and receiving that gift brought us the comfort of knowing we are not alone.

With Gratitude, Cheryl, Carl and Chelsea Gardner

We first connected with Rett Syndrome Angels in 2016, when our family was just beginning our Rett syndrome journey. Since then, we have attended Blue Sky Day and other family events, participated in Dr. Lieberman’s calls, and received a comfort meal during a difficult time. This community has given us connection, support, and the comfort of knowing we are never alone.

Sincerely, Priscilla Bessa and family

5 months after a whirlwind move across continents to Massachusetts, to a city and state with no family, we received Lila's diagnosis of Rett Syndrome. We quickly discovered Rett Syndrome Angels and dove into the community looking for answers, stories, and most of all, encouragement. Since then, we've attended every event we've been able to, including Blue Sky Day, Hippotherapy, Adaptive Swim, picnics and much more. We are so thankful for the leadership of this group and the community it fosters. We've been able to meet a number of families that we can lean on because they are families who simply 'get it'. In a journey as difficult as Rett Syndrome, we are thankful for this rare but mighty group!

Grateful, Lugo Family

2020 was a challenging year for everyone. It was a year of historic presidential election, massive protests of social injustice, and the COVID 19 pandemic. It was especially trying for our family because it also was the year our daughter received her Rett Syndrome Diagnosis. In the midst of quarantine and high stress with twin children under age 2, we now faced sadness, shock, and uncertainty of what the future would hold for our daughter and her future. I felt helpless, angry, sad, alone and anxious. I immediately began to research the diagnosis and was referred to Boston Children’s Hospital Rett Clinic to meet with Dr. Lieberman a neurologist specialist for Rett. We connected and he met with our daughter and family. He suggested connecting with other families and community group for support and education through the RS Angel organizations via Facebook. At the time I was worried to meet others . I was not ready to share our story and worried to see what the future may hold. Joining the group via facebook I was immediately welcomed. I saw photos of community gatherings, zoom educational webinars, sharing of stories and pictures of happiness and hope. In October of 2020 I joined my first community gathering. It was at Camp Harkness Blue Sky day!! I was able to connect with beautiful families and share experiences and stories of empowerment, empathy, and most of all hope. I no longer felt alone, I felt supported and realized we are a community and we are in this journey together. I saw children boys and girls of various ages and abilities thriving and having fun. Villages of families and caregivers enjoying each other and life. No sadness, just love and laughter. All while learning about each other and helping one another. Our daughter is now 8 and we continue to meet at least annually or more and stay connected via text or social media. It has been a blessing getting to know everyone. Especially Maggie! It’s a bond that will never be broken and true friendship. Having this group has allowed us to cope and has provided us with support and great memories for my daughter and our family. Thank you RS angels!

Jessica, Elitza and the Pelletier family