Oriane D.: A Story Not Only About Crisis Fundraising, But Also About Prevention
Oriane D., Fighting for a Cure and Advocating for the Sickle Cell Community, shared a post on LinkedIn by Fertility News, adding:
“IVF and PGT-M Should Be a Right, Not a Privilege – Especially for Families Like Mine․
I am the mother of two children living with sickle cell disease (SCD). Every single day, I watch them fight a disease that could have been prevented – if access to IVF with preimplantation genetic testing (PGT-M) had been available and affordable to us before they were born.
Right now, I’m fighting for a different kind of miracle: using IVF and PGT-M to conceive a child who is both free of SCD and a genetic match for my two children – so that child’s cord blood and bone marrow could cure them both. But this path costs tens of thousands of dollars, money most families like mine simply don’t have. So today, I’m forced to beg – desperately – for donations just to give my children a chance at a cure they never should have needed in the first place.
This shouldn’t only be a story about crisis fundraising. It should be a story about prevention. Families who carry the sickle cell trait deserve real, affordable access to IVF and PGT-M before they have children – not years later, when a child is already suffering, and the only path forward is a desperate plea to strangers on the internet.
It is only by making this access real and affordable that the cycle of this disease will finally be broken.
I’m sharing my story not just to ask for help for my own children – though I am asking, with everything in me – but to advocate for a future where no parent has to watch their child suffer from something that could have been prevented, simply because the technology to prevent it wasn’t within reach.
If our story moves you, please consider supporting our journey.
Read our full story․”
You can also read Fertility News’ post: “Lucy Froese: Accepting That IVF Could Be My Path to Becoming a Mum Felt Enormous…“.
Marianne Yee, Associate Professor of Pediatrics, Hematology/Oncology at Emory University School of Medicine, shared Oriane’s post, adding:
“Powerful words. Truly heartfelt and powerful.
I support this family, reproductive options, and access to care not being restricted by wealth and country.
I will keep sharing over and over to help this family and others make IVF with PGT-M a reality for those who choose it, not a theoretical, out-of-reach dream.”
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