Eden was born on March 6, 2022. Three weeks after birth, he began having intense seizures and was admitted several times to Korle-Bu Teaching Hospital, where doctors suggested a genome test. The results confirmed a disease called Congenital Disorder of Glycosylation (CDG).
There are very few people worldwide who suffer from CDG, which is a rare genetic disease. Research has not been done on Eden's case, and Ghana does not have treatment facilities. With CDG, patients often suffer from fluid accumulation around the heart and lungs, liver disease, seizures, floppiness, abnormal bleeding, strabismus, and poor vision.
As parents, we have to hold Eden constantly since Eden is incapable of sitting, standing, or walking, and he lacks neck control. As a result, I am not unable to work to support the home; my husband has been the sole provider. We've had a very difficult time because of this.
As a result of contacting the National Institutes of Health (NIH), we were referred to Children's Hospital of Philadelphia (CHOP), where an individualized treatment plan was prepared for Eden. Early intervention can have a massive impact on Eden's health and livelihood, as some children that received treatment for similar conditions were reported to be doing well overseas.
Children's Hospital of Philadelphia has provided us with a preliminary cost of $107, 200, but they are offering us a 20% discount, bringing the cost down to $86,000, which we cannot afford. Outpatient pharmacy, outpatient medical equipment, outpatient home care, or travel expenses are not included in the indicated cost. A full payment is required to receive an appointment letter from the hospital, which is needed by the Embassy and airlines. It is our hope that donors will assist us.