A very rare genetic disease makes it almost impossible for parents to hug or touch their baby.
An article published in American Live Wire shared the story of Jason and Krish whose baby Kiiara has a chronic skin disease known as recessive dystrophic epidermolysis bullosa.
According to Genetics Reference, DEB is a genetic disorder characterized by easy blistering of the skin. It's as if it's the most vulnerable or fragile part of the body. It's so sensitive to any type of friction, which can come from clothes rubbing onto the skin or even a skin-to-skin contact.
For this reason, the parents are having a very hard time lifting the baby especially from the underarms. The mother also lamented that she could hardly touch the baby's skin since it's usually bandaged. The baby also needs to be picked up with a blanket to avoid any form of skin-to-skin contact.
DEB is caused by a mutation of COL7A1 gene, which alters the way the protein responsible for building of a certain type of collagen works. Thus, the dermis and the epidermis don't bind very well. Most of the severe kinds of DEB are inherited from recessive genes.
The disease, nevertheless, remains very rare that there's not much research about it. This also explains why there's no cure so far. Right now the only thing the parents can do for the baby is to relieve her of the paint that often comes with peeling and blistering.
It's very important that the skin is protected very well since skin lesions can lead to a high risk of infection.
Kiira has two other siblings who, according to parents, have not fully understood the baby's condition yet but are praying for her complete recovery.
The family right now is working hard to finance for Kiira's treatment, which amounts to around $20,000 a year. Although a portion of it is covered by their health insurance, they hope they can raise more funds through donation from friends and family.