Support Kelsey Anne's Fight Against Krabbe Disease

Help Kelsey Anne Fight Krabbe Disease

Imagine bringing your beautiful baby into the world, only to be told weeks later that she may have been born with a rare and devastating genetic condition. That’s the reality my sister, Paige, and brother-in-law, Joe, are facing as they fight to give their daughter, Kelsey Anne, the best chance at life.

What is Krabbe Disease?

Krabbe disease is a rare genetic disease. Krabbe disease impacts 1 out of 100,000 individuals - she would be the SIXTH case in Ohio since the newborn screening process started. Krabbe disease is one of a group of diseases called leukodystrophies that affect the brain, spinal cord, and nerves. It causes the degradation of myelin, the thin insulating layer around the nerves. It is caused by a deficiency in an enzyme needed to protect the nerves. Without this enzyme, toxic substances build up, causing progressive damage.

Some of the first symptoms include:

• Unusual fussiness or irritability.

• Poor feeding.

• Muscle weakness or stiffness.

• Unexplained fevers.

As the disease gets worse, other symptoms may include:

• Seizures.

• Hearing loss.

• Vision loss.

• Nerve pain in the hands and feet.

• Inability to move and swallow.

In late-onset Krabbe disease, symptoms may include:

• Muscle weakness or stiffness.

• Trouble walking.

• Hearing or vision loss.

• Seizures.

• A decline in mental ability.

Without treatment, many children with severe forms do not survive past early childhood.

There is hope. Early treatments, such as stem cell transplants or gene therapy, can delay or prevent symptoms. But these procedures are costly, complex, and often require families to dedicate every resource to their child’s care.

Meet Kelsey Anne

Kelsey Anne was born December 27th at 9:17am. Kelsey was born 6lbs. 13oz. and 20in long. Kelsey received routine newborn testing in the hospital after birth that flagged her medical team that she was at a elevated risk for krabbe disease. Further genetic testing revealed that she has two genetic markers for Krabbe disease, confirming families worst nightmares that she is at risk if developing symptoms within months, refereed to as early or late infantile onset. Specialists are working to determine her exact prognosis, but it’s already clear that time is critical. Early intervention could mean the difference between a higher quality of life and longevity and one of immense challenge limited by severe neurological decline caused by Krabbe Disease.

Kelsey has already undergone multiple tests, with more on the horizon. Her journey will involve specialists, consultations, and possibly life-saving treatments, which will require time, travel, and financial resources far beyond what any family should face alone.

Meet Paige and Joe

Paige and Joe are incredible parents, partners, and people who have always worked hard to care for others while building a loving life together. They’ve been together for over 10 years and are now facing a challenge no family should have to endure.

    •    Paige (Yerger) Newton is a dedicated social worker who has devoted her career to helping others in crisis. Her diverse career has allowed her work in several different capacities, inpatient hospital discharge planning, emergency medicine, rape crisis center, hospice, home healthcare, and now in dialysis care, she has always been passionate about lifting others during their most vulnerable times in the face of medical uncertainty. Paige herself has overcome significant challenges, including a traumatic accident as a teenager, yet she remains one of the strongest and most inspiring people you’ll ever meet.

    •    Joe Newton served in the United States Marine Corps as a Forward Observer. Joe finished his 4 years of services and went on to become a graduate of The Ohio State University with a degree in City and Regional planning, currently working as the Risk Manager for the city of Florence, Kentucky. Joe has always approached life with discipline, focus, and a deep love for his family.

The Current Situation

Paige has already begun FMLA leave for the birth of Kelsey. Though FMLA provides 12 weeks of job security, it doesn’t guarantee pay. Paige is expected to exhaust her extended sick leave and paid time off by the end of her 12 weeks leave. Joe initially planned to take 2 weeks off following the birth of Kelsey utilizing his paid time off. This leave has extended longer and longer as Kelsey’s diagnosis has unfurled. Joe is projected to exhaust his paid time off by the end of this week. They cannot afford to stay away from work indefinitely without pay while pursuing the care Kelsey desperately needs.

The medical bills, travel expenses to specialists, and costs of living without income are quickly overwhelming. Paige and Joe are now faced with the impossible choice of sacrificing work or care—but with your help, we can ease their financial burden and allow them to focus entirely on Kelsey.

How You Can Help

Your donation will directly support Kelsey Anne’s fight by helping her family cover:

    •    Medical costs for testing, treatments, and consultations with specialists.

    •    Travel expenses to visit out-of-state experts in Krabbe Disease, including those in at Duke in Durham, North Carolina and Childrens hospital of Pittsburgh, Pennsylvania

    •    Living costs while Paige and Joe dedicate themselves to Kelsey’s care, without the pressure of returning to work before it’s financially feasible.

Every contribution, no matter the size, makes a difference. Whether it’s $5 or $500, your generosity will help ensure Kelsey Anne has every opportunity for a bright future. If you’re unable to donate, please consider sharing this campaign with your friends, family, and network to help us spread the word. And PLEASE PRAY! More than just a donation, we believe in the power of God and the miracles he can perform.

Every Dollar Counts

Paige and Joe are determined to give Kelsey Anne the best possible chance at a full, healthy life. Let’s rally around them and show that no family fights alone. Together, we can lighten their burden and give Kelsey the opportunity to thrive.

Thank you for your support, your kindness, and your prayers.

-Sydney (Yerger) Meyer, proud aunt to Kelsey Anne