Hope for Hannah

Hi, this is Hannah Michelle Vander Vlucht. I was born on August 13th, and my PKU test revealed that I have Krabbe disease. Krabbe disease is a rare genetic disorder, a neurological condition resulting from the lack of protective covering surrounding nerve cells. Krabbe disease slowly damages the white matter of the brain, as well as the rest of the central nervous system. Krabbe disease affects 1 out of 100,000 people. In Hannah's specific case, she has not 1 but 2 mutations, which is extremely rare, and there is only one other case in the United States.

The next step for Hannah is to undergo a Hematopoietic Stem Cell Transplantation (HSCT), which is typically derived from bone marrow, peripheral blood, or umbilical cord. The goal is to perform the transplant before Hannah is 30 days old.

Hannah is currently going through numerous extensive tests. She recently had a tissue typing test known as HLA (human leukocyte antigen) to determine a donor match. As Hannah awaits the results of the HLA test, she will have several MRIs, a spinal tap, and EMG, to name a few.

Once a donor is found, Hannah will undergo surgery to have a port placed to help provide medicine through her treatment. After the port is placed, Hannah will receive chemo treatment for 10 days to help eliminate the blood-producing cells to help receive the new donor cells. Following the chemotherapy, Hannah will be ready for Transplant Day. The transplant typically takes about 30 minutes and is administered through the port. After receiving the transplant, Hannah will be monitored for at least eight weeks in the hospital. Twenty-one days after the transplant, Hannah will begin clinical testing due to the rarity of her case.

Thanks for taking the time to read Hannah's story as she begins this journey. Please donate to help the family with medical costs that will accrue during treatment and recovery. Also, please keep the family in your prayers during this time.

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