Our Family Story

Help Our Family Pursue a Future Free of Sickle Cell Disease

We are asking for your help to give our two children with sickle cell disease the possibility of a cure.

My name is Oriane D. We are parents of three children. My partner and I are both carriers of sickle cell trait, something that we did not know until after we began our family together. Two of our children (the oldest and the youngest) have hemoglobin SS sickle cell disease. Our older child was not diagnosed until later in childhood, and this was devastating news to receive. Our middle child carries sickle cell trait. And our youngest also has SS sickle cell disease, which we learned shortly after he was born.

After our third child was born, we knew we needed to find the best possible medical care that we could for our children with sickle cell. Our eldest had already experienced many illnesses and infections. And although we knew our infant was not yet sick, we knew what might lie ahead for him.

We were sent to Children’s Healthcare of Atlanta, to the Aflac Cancer and Blood Disorders Center. Our doctor met our children and immediately tested all 3 of them to see if our middle child might be a match to provide stem cells for a life-saving bone marrow transplantation. Unfortunately, she was not a match. But we then found some hope – our oldest and youngest both have the same bone marrow (HLA) type. The doctor explained that if we had another child who did not have sickle cell and had their HLA type, that child’s stem cells could potentially cure both of our children with sickle cell. We were filled with hope but also worry. We knew that there was also a 1 in 4 chance that another baby could have sickle cell.

Our doctor told us about IVF (in vitro fertilization) with PGT-M, as a way to grow and complete our family and to provide a way to cure sickle cell in our family. This is more involved and expensive than standard IVF. Each embryo must be tested for SS sickle cell and to see if they have the same HLA type as our 2 children.

As a mother, I knew that I must do anything and everything to help my children. With IVF, time is not on our side. My oldest child is 9 years old, and has already had pain and symptoms from sickle cell. When we came to the Aflac clinic at CHOA, she had her first TCD test, and we learned that she is at high risk of stroke. This compelled us even further to seek a cure for her. Her doctor also explained that transplant is best done before her teen years. Every year is a risk for my daughter to wait, and also is harder for me to have a child. My own lab tests showed that I will most likely need more than one cycle of IVF in order to have a baby who can be a blood and bone marrow donor to our children.

For these urgent reasons, I ask for your help, your generosity, and your caring humanity to help my family and my children. After one visit with the Fertility doctor, I am not able to proceed forward because of the cost. We do not have fertility insurance, and the cost of IVF and genetic testing is far beyond what our family can afford without help.It would be better for me to start the process before the end of this year given the urgency and difficulty of the situation.

While I wait, I watch my daughter have a pain crisis, limping in pain when I rushed to get her from school. Seeing her like that tears my heart apart. But her courage, her awareness, and her resilience — despite her young age — push us forward every day.

We need:

$25,000 per IVF cycle/embryo

$5000 for PGT-M for HbS

$5000 for PGT for HLA matching

That totals $35,000 per attempt.

The doctor says chances are that we need 2 attempts to achieve this goal.

$70,000 for 2 attempts.

We will be forever grateful for your generosity, however much, both with donations and sharing our story so that more people might be moved to help us.

We are not seeking IVF for comfort. We are seeking it to save our children.

We are a family built on love and resilience. With your support, we can give our children the future they deserve.

Privacy note: You may notice that we have chosen not to publicly show our faces, especially the faces of our children. We sincerely hope you will understand this choice. Our children have never been exposed on social media, and we have always made a conscious decision to protect their privacy and allow them to grow up away from public exposure.

Sharing our story publicly is already a deeply personal step for us. We are doing so because we have reached a point where we need to ask for help, while still wanting to honor our children's privacy and dignity. The absence of clear faces does not mean that our story is any less real; it simply reflects the way we have chosen to protect the people we love most.

To everyone who takes the time to read our story, share it, pray for us, or contribute to our journey, thank you from the bottom of our hearts. Every donation, no matter the amount, represents more than financial support to our family. It gives us a renewed breath of hope and brings us one step closer to the future we are praying and working so hard for.

Thank you for believing in our family, for respecting our privacy, and for helping us hold on to hope. ❤️

Thank you for reading our story.

Oriane D.