When my daughter Agustina was 2 and a half years old, our lives changed forever.

It was very difficult to reach a diagnosis. And when we finally received it, it was devastating.

We found ourselves in a desert.

The first thing we were told was that there was no cure. Then they told us our daughter would not live past the age of 6. It was one of the hardest blows our family has ever faced. No one could really explain what Fanconi anemia was. We only knew it was a rare disease, and that our little girl had very little time.

But Agustina had other plans.

She lived until she was 8 years old, defying everything that was against her. She fought tirelessly to live. She went through a bone marrow transplant, long hospitalizations, infections, medications, and countless blood and platelet transfusions.

Through it all, she never stopped being herself.

Agustina was a very happy and deeply loved little girl who always had a smile on her face. She was an actress, a singer, and a dancer. She dreamed of becoming a veterinarian because she loved animals so much. She loved visiting the farm, putting on makeup, listening to music, riding her bicycle with her dad, and living, simply living.

Living with Fanconi anemia is incredibly difficult for children and their families. They endure long, painful hospital stays and countless medical procedures. Every person with FA is different, but they all deserve the chance to live full lives.

That is why we need a real cure.

We also need more people to understand what families affected by FA go through every day. Greater awareness brings understanding, and understanding helps move us closer to better care, more research, and ultimately a cure.

My beautiful little girl, Agustina, passed away on July 30, 2024, at 6:10 p.m.

Today, I continue to honor her by carrying her legacy forward.

I am the founder and director of the Argentine Fanconi Anemia Group, an organization I created after Agustina’s diagnosis to raise awareness, make FA more visible, and support other families facing this disease. Today I continue this work from a different place, learning to live with endless grief while creating positive spaces of support and comfort for others.

To the donors who make research possible, thank you.

Thank you for your support. Thank you for helping our children have a better quality of life and for bringing us closer to the day when there is a real cure.

And to the Fanconi Cancer Foundation, thank you for always standing beside my family. Thank you for teaching us about this disease, for creating a global community that connects families across so many countries, for continuing to invest in research and support organizations around the world, and above all, for creating a place where we can remember the people with FA who are no longer with us.

Thank you for keeping their memory alive.

Agustina’s memory lives on in every family supported, every conversation that raises awareness, and every step toward the cure she deserved.

The post Why We Need a Real Cure  appeared first on Fanconi Cancer Foundation.

At the Fanconi Cancer Foundation, we work together to improve the lives of individuals and families impacted by Fanconi anemia. While creating brighter futures continues to motivate our community, we also recognize the importance of honoring and remembering those we’ve lost to FA and its complications.

Today, many across the FA community are grieving alongside the family and loved ones of Isaac Coleman. Isaac’s life, and the lives of so many others affected by FA, are a reminder of why this work matters so deeply. We are honored to include Isaac on the Memorial Wall alongside the many cherished individuals whose memories continue to inspire this community forward.

Grief takes many forms, and there is no single way to remember. We believe every life touched by FA deserves to be honored, and that no one should have to carry their love or grief alone.

Every life remembered here mattered deeply — and always will.

Explore the opportunities and resources offered to our Bereaved Families

As Bereaved Parents Awareness Month approaches this July, we invite you to visit our Memorial Wall to remember and celebrate those we’ve lost. If and when it feels right, we also invite families and loved ones to add a name, photo, and short tribute in honor of someone special.

Add a Loved One to the Memorial Wall

We are also welcoming story submissions for our blog. If you would like to share more about your loved one’s life, the impact they made, or what remembrance means to you, we would be honored to hear from you.

Share a Story with Our Community

Throughout July, we will to continue sharing the Memorial Wall and selected stories with the wider FA community. The Memorial Wall will remain on our website as a permanent space for remembrance. Your loved one will always be part of this community, and so will you.

Whether you choose to share a story, submit a tribute, or simply visit the Memorial Wall to honor these incredible individuals and their memory, thank you for being part of the FA community.

With compassion,
The FCF Team

The post The FA Memorial Wall: A Space to Remember appeared first on Fanconi Cancer Foundation.

As we remember all of those we’ve lost, it’s important to acknowledge the shockwave that is grief, which can reverberate throughout the entire community during times of loss.

Most in this community have witnessed the difficulties experienced by those with FA and their loved ones. Social media has made it easy to share and follow life updates, making it a helpful tool for gathering information and providing support; however, it also exposes us to the raw challenges that accompany this disease, including the loss of loved ones.

When members of an entire community experience extreme change or loss, collective grief may occur as a natural response, and community members may experience feeling a lack of control and powerlessness. Anticipatory grief may also accompany collective grief, compounding these feelings, as we see loss around us and anticipate future loss. When we experience grief individually, we are typically most aware of our own personal mourning processes, but with collective grief, we become bound to the grief and mourning of others within the community.

Because this collective experience can be overwhelming, we’ve provided some potential ways that we might cope together, while acknowledging it is completely appropriate to process grief in your own way. There is no one way to experience or integrate grief into one’s life; it’s unique to each individual.

Public mourning

Virtual grief support groups, FA Facebook groups, community vigils, the “Living Memory Room” at FA retreats. More information can be found at Fanconi.org or by emailing FARF at info@fanconi.org.

Publicly honor those who have died

Submit a photo and loving note to FARF for the “In Loving Memory” section of the newsletter, submit photos and stories for the “Living Memory Room” at the FA Adult Retreat, post pictures and share favorite memories on social media, plant a tree in honor, advocate for a cause in honor, participate in a memory walk/run.

Practice community care

Volunteer to make heartfelt cards for those grieving in the community, volunteer as a virtual grief group facilitator, send a loving message or flowers to the grieving family, reach out to those that are having a difficult time.

Personal space

Public mourning isn’t for everyone. We all grieve in our own ways. For some, this might look like journaling, meeting with a therapist, reading, researching, or even stepping away from FA community activities for a time, if that’s what it takes to tend to yourself with compassion.

We will all experience grief in various forms throughout our lives. There’s no step-by-step manual for processing grief, and there’s no timeline. And while overwhelming, collective grieving can be a powerful reminder that we are not alone in this.

Poet, Mark Nepo wrote, “If we commit to loving, we will inevitably know loss and grief. If we try to avoid loss and grief, we will never truly love. Yet powerfully and mysteriously, knowing both love and loss is what brings us fully and deeply alive.”

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