Eden’s CDG Medical Expenses 

Eden Kekeli Akwasi Tsimekpe was born on 6th of March,2022. He started having intense seizures 3 weeks after birth and has been admitted several times at Korle-Bu Teaching Hospital, it is where the doctors suggested we do a whole genome test because there had been a precedent case. The result showed our son had a disease called Congenital Disorder of Glycosylation (CDG)

CDG is a very rare genetic affecting few people around the globe. Our son's case is "probably" the first discovered in Ghana, and unfortunately, there is no treatment in our country. CDG come along with  heart problems which includes fluid accumulating around the heart and lungs,liver disease,seizures,floppiness,abnormal bleeding or clotting, developmental delays, strabismus, poor vision.

This has made life very difficult for Eden and us the parents because Eden can neither sit,stand or walk, he has lost neck control and we have to practically do everything for him. For that reason am not unable work to support the home it has been my husband alone catering for us. This has made life very tough for us.

Luckily for us, there is treatment available in the United States. We contacted the National Institute of Health (NIH), and they in turn referred us to Children’s Hospital of Philadelphia (CHOP), where they have prepared a treatment plan for Eden. This treatment will improve Eden’s health massively if early intervention is made as we have seen some children with same condition thriving and doing very well overseas.

The cost estimate involve is $107, 200 but the hospital is giving us a 20% discount which would bring the cost down to $86,000 and we are not in a position to make all payment.We are appealing to donors to come to our aid.