When three mothers — Elaine, Jenny, and Suma — each lost a child to Rett syndrome, they found themselves searching for someone who could truly understand their pain. In that search, they found one another through Life After Rett, a Facebook community created to help grieving caregivers connect, remember, and heal. What began as a small online gathering has become a safe haven – a place to share memories, sit in silence, or simply be among those who understand the depth of this loss.
The group began about 15 years ago, when a grieving mother, searching for understanding after her daughter’s passing from Rett syndrome, created a space for connection. Over time, others have found their way there too — parents and caregivers from around the world who shared the same heartbreak and longing for community. Within this circle of compassion, words aren’t always needed. Sometimes, simply showing up is enough.
“These are our people,” Elaine said, referring to the Life After Rett community. “The members of this group understand our complicated grief. We first grieved the life of a typical child, and now we grieve the loss of our children in the world. When I lost Dani to Rett, I lost my job, my sense of purpose, my reason to exist … I lost everything. It’s absolutely devastating. This group is a lifeline.”
The Life After Rett group is designed to meet each parent or caregiver wherever they are in their grief journey. Thirteen years after losing her daughter, Elaine still finds comfort in the group and checks in every day. There is no expectation of healing on a schedule, no pressure to move on – only the understanding that grief takes many shapes and changes with time.
Life After Rett serves as both a memorial and a gathering space, celebrating those who have passed and honoring their lives through photos, memories, and words of love. Parents share moments that others in the group recognize instantly – videos of a child’s laughter, memories of birthdays past, stories from hospital stays, or photos that capture the expressive eyes of children who, though nonverbal, could speak volumes without saying a word. Every story shared is met with compassion and understanding.
Each month, members are invited to join a group Zoom chat called Holding Space. Some attend regularly; others prefer to listen or connect through the Facebook page alone. When a new parent joins, the members welcome them with gentleness, allowing them to share their story when they are ready. Sometimes they speak. Sometimes they just listen. Together, they navigate difficult days – birthdays, holidays, “Angel Days” – moments that can leave them feeling both grateful and shattered.
“Grief is not linear,” Jenny explained. “Sometimes you can cycle through all the phases in one day. The one thing that is consistent about grief is that it does change over time. Having support from this group to meet you at these different stages makes all the difference in the world.”
Jenny’s daughter, Emily, passed away in 2023. Though Emily had many happy, art-filled days, she spent countless others in the hospital facing complications. The emotional and physical toll of caring for a medically complex child is something the group understands without words. Their bond, born from heartbreak, endures through shared understanding. In each other, they find a reflection of their grief – and a glimmer of healing.
Holding space for each other
“I learned about this group from another friend who had lost her daughter,” Suma recalled. “It just so happened that my first Zoom call was less than a month after Srinidhi’s passing – I couldn’t even find the words to speak. But my friends – yes, I call them friends now – patiently listened and held space for me.”
That first call was a lifeline for Suma. “What I remember at the end of that call was that I left with a smile on my face,” she shared. “It was a smile laced with grief and tears, but it was the first time I remember smiling since Srinidhi had passed.
“This group has become my safe space, where I can speak freely about both my fears and my joys. Even when I say little, they understand so much more than I could ever express.”
As the women’s connection deepened, Elaine, who served as the page moderator with another mother, saw the unique perspectives Jenny and Suma brought to the group. Now, the three work in collaboration with IRSF to help moderate the group and ensure it remains a compassionate, supportive space for bereaved families.
“Even though I am surrounded by people who loved my daughter, after a while, you think that maybe they don’t want to hear about her anymore,” Jenny admitted. “But with this group, it’s just the opposite. We all want to hear the stories, to keep their stories alive. I have shed tears and erupted in laughter many times in the same call. It’s all part of it.”
For Elaine, Jenny, Suma, and so many others, Life After Rett has become more than a support group – it’s a promise that no one must walk through grief alone.
“With this group, we don’t judge others for how they grieve,” said Suma. “We simply show up and listen. The three of us like to laugh a lot – it’s healing for us. We say that the laughter is part of our grief brain. We can still laugh through our tears.”
Honoring every child, together
The group hopes for the day when families no longer lose loved ones to Rett syndrome. But until that day comes, they’ll be here, honoring the children who shaped their worlds, carrying their memories forward, and holding space to share the heartbreak and the healing.
“Suma and Jenny have saved me,” Elaine said. “Other members of our group have become very close friends as well. While we all wish we had met under different circumstances, we are extremely grateful to have each other.”
If you are a parent or carer who has lost a loved one to Rett syndrome and would like to join Life After Rett: Remembering, Grieving, and Healing Together, please request access to the page here.