While she’s constantly smiling and full of energy, little girl Makenzie Cadmus struggles with a rare condition known as epidermolysis bullosa, reports News 12 Long Island. The rare disease has caused extreme limitations in her life forcing her to have a bone marrow transplant this next week. Her family created campaigns to bring awareness, raise money and hopefully have a little fun in the process.
Epidermolysis bullosa is a rare skin condition that makes one’s skin as “delicate as a butterfly”. The disease doesn’t allow the body to produce the needed amount of collagen to protect it’s own skin. Every day activities are dangerous and can threaten the patient. To read more about it, click here.
Because this, patients like Makenzie wear bandages as a protective layer to avoid any injury. There is no established cure or successful treatment for the disease as of late, but there is an experimental bone marrow transplant that Makenzie will undergo next week in Minneapolis hospital, with hopes that it will change her life. The closest bone marrow match will be coming from her brother, Crosby, who’s a healthy 6-year-old. Unfortunately, the procedure comes with a steep $2 million expense and it’s not fully covered by health insurance. The family has created challenges for friends and family to bring awareness and raise money for this procedure.
The first challenge is called #SockIt2EB– everyone is encouraged to go through an entire day wearing socks on their hands, so they can feel what it’s like to live like an EB patient.
The second challenge is the #LetThePiesFly4EB. They ask that people send in videos of them getting pied in the face. The family’s plan is to show Makenzie all these videos after her operation because the recovery is so painful. They want to bring her as much joy as possible.
If you’d like to donate to their campaign, visit their GoFundMe page here.