Siblings Day: Honoring the Unique Relationships in Rett Syndrome Families

Apr 9

April 10th, 2024, is Siblings Day. RMRA has decided to honor this occasion by sharing some moments from our Rett community that were shared with us, highlighting the amazing brothers and sisters who consistently show up for their Rett siblings. The seven groups of siblings to individuals with Rett have shared their stories below, and it is so beautiful to see how much they love, uplift, and deeply care for their siblings. Life can be hard, and life with Rett Syndrome is even harder. These siblings fight for their sister daily and hope for the best for them. Love is the most powerful force in the world, and these Rett warriors are lucky to have their siblings by their side.

Jayla, Joseph, and Jacob

Living with Rett syndrome is not easy for Jayla, her parents, and especially her big brothers, Joseph and Jacob. They see her struggles and want to ensure they are there to help her when she needs a hand or support! Joseph went viral because he was there with Jayla when she walked up her front steps all by herself! He once told his parents, “Mom, Dad… when you are no longer here, don’t worry. I will take care of Jayla.” Jayla’s mom says, “That broke my heart but healed it without him knowing. As a Rett mama, this has been a huge fear, and hearing his love for her makes me feel like everything will be okay.”

Olivia and Caia

Caia is Olivia’s biggest cheerleader. Whenever they meet new people, she is quick to introduce “Oli” and loves to answer any questions about her wheelchair or Tobii. Caia is so proud of her sister and always makes sure Olivia isn’t left out. She has been a part of Oli’s support team since she was a toddler and reminds Oli every morning how special, brave and loved she is.

Myla and Peyton

Peyton is truly the best big sister. She is always so proud of Myla's accomplishments, no matter how big or small. If Myla does something with her eye gaze, Peyton is always there to cheer her on. When Myla makes a new sound or does a new gross motor skill, Peyton tells everyone about it. The other day Myla said, "play Peyton" with her eye gaze, and Peyton had her surrounded by every toy in their house in minutes.

Matilda (Tillie), Ben, and Astrid

Many mornings, Ben (age 9), the oldest sibling, will rise first and carry Tillie from her bed to the sofa. They watch cartoons while their parents sleep in until 7. Astrid (age 2.5), the youngest sibling, regularly asks and feeds Tillie. It’s beyond helpful and always makes their parents emotional. Tillie’s mom says, “I love our trio! We aren’t perfect, but my children genuinely care for one another and it makes our life beautiful.”

Ava and Noemi

Ava’s sister, Noemi, shares an image from when Ava had her first EEG. Noemi shares that “I love this picture because it shows how strong Ava is. Going through all the tests, she has a smile on her face, and I’m happy to be by her side to make sure she feels safe and comfortable.”

Kerrigan and Shea

A 10-year age gap is pretty large, and that sometimes means that the kids aren’t close, but that definitely isn’t the case with Shea and Kerrigan. Shea and Kerrigan’s mama never would’ve thought that a 16-year-old girl would consider her 6-year-old little sister her best friend but Shea will tell anyone that Kerrigan is her best friend. Their bond is more than a sisterly bond; it’s like Shea is Kerrigan’s second mom. Shea always sets the bar so high for Kerrigan, and in her mind, there isn’t anything that Kerrigan can’t do. If someone puts a limitation on Kerrigan, then Shea takes that as a challenge for her to prove that person wrong. One of my favorite memories is when Kerrigan was around 2 years old, and she took steps for the first time. The therapist said that she would probably not be able to walk barefoot. Shea worked with Kerrigan the rest of the day, and by the end of the afternoon, she had Kerrigan taking steps barefoot. She was so proud of what they both accomplished. These girls are definitely a dynamic duo and will do anything to overpower Rett.

Josephine (JJ) and Rosemary (RoRo)

Rosemary (age 9) recently wrote a short story about her sister with Rett Syndrome, Josephine (age 6). Here is RoRo’s short story:

She's my sister. I love her. Sometimes she's annoying, but still most of the time she's nice. JJ is really imaginative, like me. At times, I see a different girl in her, lost in thought. Sometimes she's just sassy. Sometimes she's fussy. But best of all is when her eyes get bright, she has a huge smile, and sometimes starts giggling. It's such a joy to me, watching her be happy.

Life is hard with a sister who has Rett Syndrome. She can't walk, talk, or use her hands. When she gets sick, she really gets sick. The times when she's having a bad day make me really sad to see her suffer.

JJ is really smart. (She's fed up with being taught the ABC's). I know she might look dumb, but that is not the case. Life with JJ has joys and sorrows as we work through the hard parts together.

As sisters.