Drew Byers- Fanconi Anemia Diagnosis

Hi everyone, my name is Chelsey and I'm setting up this Go Fund Me for my niece, Drew. My sister, Rachel and her husband Cory have been going through a difficult time with their infant daughter who is now 8 months old. Drew was born on July 18th, 2022. Before she was born, Rachel and Cory were notified during pregnancy that Rachel had a 2 vessel umbilical chord ( a normal chord has 3 vessels ) and that this could affect the baby’s growth during the pregnancy. During a few routine visits, they were told the baby was possibly missing a kidney as they could not find it on her scans, but that baby would be healthy otherwise. Drew was born at 37 weeks, weighing only 5 pounds.

Post-Birth- Her kidney was found but was smaller than normal and has gone through numerous testing to find out that her one kidney was having issues regulating her potassium and sodium levels in her blood, the basic kidney function. Drew also had large hemangiomas, or birthmarks that needed attending to. She has spent time in the hospital, done numerous tests for these issues and has been on special formula and taking many kinds of medication to regulate the levels in her kidneys as well as keep the hemangiomas from growing larger. She is also undergoing hearing tests as the doctors have noticed a decrease in hearing in one of her ears as her ear canals are very small. Drew also did a 5-6 day stay at the Brookings Hospital and the Sanford Castle for a severe case of RSV. Any time Drew gets sick, there is a very high possible risk of infection and her kidney function is the main focus when she is sick and needs to be monitored.

In January of 2023, after doing some blood/genetic testing for Drew and getting samples from Cory and Rachel, doctors diagnosed Drew with Fanconi Anemia. Fanconi anemia (FA) is an inherited DNA-repair disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors. FA can affect all systems of the body. The types and severity of symptoms can differ widely from person to person. FA is sometimes evident at birth through a variety of physical defects such as skeletal anomalies, kidney/organ problems, skin discoloration, growth deficiency, many of which Drew has.

This genetic disorder is not curable, but treatable. If bone marrow failure exists, it can be treated with bone marrow or stem cell transplants. This is why Drew will require yearly bone marrow tests, with her first one being in April and blood testing every 3-4 months throughout her life.

As a result of this diagnosis, Drew also needs her blood sugar checked daily to make sure her levels in her blood are staying under control as well as continuing with the daily medication and special formula she takes to regulate her kidneys.

They also found that this disease keeps Drew from reproducing chromosomes in her body as the normal body does. This will mean she can not have radiation, x-rays or CT scans along with very limited sun exposure as these things break those chromosomes in her body that she can not repair.

Drew will need treatment and therapy her entire life. I am starting this Go Fund Me to help offset any type of cost, the medical debt they have already endured, travel and/or care for Drew and to ease some of the burdens that health insurance may not cover. The Byers family will have many, many dr appts, travel, surgeries, hospital stays and time off of work in the future. Please keep them and their 2.5-year-old daughter, Teagan, in your thoughts and prayers as they navigate this difficult time as a family and figure out a new normal caring for a child with an incurable disease.

This Go Fund Me is also raising awareness for this disease. There is not a lot of research due to its rarity and one thing that can help patients is gene therapy: is a technique that modifies a person's genes to treat or cure disease. Gene therapies can work by several mechanisms: Replacing a disease-causing gene with a healthy copy of the gene. Inactivating a disease-causing gene that is not functioning properly.

Any additional information about this disease can be found at https://www.fanconi.org/

Upcoming appts Drew has:

We will update you with any new information as we get it. Thank you so much for taking the time to read Drew's story and for any and all support for Rachel and Cory. This has been very tough and stressful for them. They have a lot on their plate with all the appts and making sure Drew is being cared for, and all the little things they have to pay attention to. I know they are so grateful for all the support they have already received from family & close friends. We want you all to know that Drew is the happiest baby and she is one tough, strong little girl. You would not know she has any issues for how smiley and happy she is.