Hi, my name is Kameshia, and my son's name is Kai. He was born on September 15, 2022, with a rare genetic disease called Infantile Pompe Onset Disease. Kai has the classic form of infantile-onset Pompe disease that begins within a few months of birth. Immediately after birth, Kai experienced muscle weakness, poor muscle tone, an enlarged liver and heart defects. He also failed to gain weight and grow at the expected rate. Doctors informed us that currently, there is no cure for Pompe Disease, and if left untreated, this form of Pompe disease leads to death from heart failure in the first year of life.

We were devastated and couldn't fathom losing our beloved son. We immediately agreed to weekly treatments, including monthly appointments with hematology that would shut down his immune system so that the treatment would work and a weekly treatment called Enzyme Replacement Therapy that would save his life and treat the disease.

We also have been assigned a cardiologist, nutritionist, physical therapist, metabolic doctor, and an outpatient center requiring 8-hour infusions. We also have two other children, ages 4 and 8. It's tough to explain to the children why we must always take their baby brother to the hospital.

This experience has been a nightmare, but we are thankful to the excellent doctors and nurses at the children's hospital who have taken great care of our sweet boy Kai. We currently live about an hour away from the hospital and have to commute almost daily sometimes and manage to take the other kids to and from school and pay for everything with little help from insurance. We would love help or resources available to relocate closer to the hospital for Kai.

We learned about Kai through newborn screening; not all states currently test for Pompe Disease or even have newborn screening. We are advocates for newborn screening and would love to get it passed in every state that newborn screening is required to prevent children from dying and growing up with difficulties that treatment can prevent when detected early enough. Thank you so much in advance, and God bless all of you. We are warriors for Kai and will beat Pompe Disease by spreading awareness, donating to research to help fight Pompe Disease and giving our son Kai the best medical care so he can live.