Harper has been diagnosed with a genetic skin disorder called Epidermolysis bullosa. It is either junctional or dytrophic.

This is the most severe version of this disorder.

Due to the severity and aggression of this disorder and the wounds she currently has, there is a huge risk for infection and sepsis.

At the moment we don’t know if or when she would be able to come home from the hospital.

The mortality rate is not very positive

Pending blood results, we will hopefully not have to do a biopsy as the wound will likely never be able to really heal. She is on iv antibiotics and medication to keep her comfortable. Harper was moved to the NICU to be part of a clinical trial for babies with genetic disorders to assist in expediting the process and getting the results sooner.

It still may take weeks for the results of her tests and there is no guarantee at this time that she will make it long enough for results depending on how aggressive the disorder effects her and if it responds to antibiotics.

There is a possible treatment. However it is a bone marrow transplant that is only available in two clinics in the US. Due to her wounds, if they do not heal she would never survive the surgery because she would be unable to fight infection.

This is only a possible surgery if the antibiotics help her heal and the open wounds decrease.

Also with her being so little, that is a very very painful and aggressive route to take. With no guarantee of improvement or survival.

All donations would assist Jessica and Matt with medical and travel expenses and are greatly appreciated!