Donations needed for joan

Three years ago after Joan returned to Kenya, her genetic testing showed that she has a rare form of muscular dystrophy called Collagen VI-related Myopathy. This causes muscles that are low in tone and weak, joint contractors (limited ability to move) and over time causes respiratory compromise as the muscles of respiration weaken slowly with age.

She has accomplished much since she left, passing her exams and going to high school and living in dorms, even though it was quite uncomfortable with her condition - she is quite a brave lady! The Kendagor's extended family has taken wonderful care of her and there is a 2-year-old girl and 1-year-old boy in the home that I'm sure she can't get enough of.

In the last 3-6 months, her condition has deteriorated further and it has become clear that the only way to get her any supportive care is to bring her back to the U.S. One of her legs swells daily and is painful. She wakes about every other night with shortness of breath/chest pain/headaches, from being low on oxygen. Please pray that in the days between now and when we arrive to get her that the orphanage family can obtain oxygen for her at night and a pulse oximeter. These common items are so rare in other parts of the world.

Dr. Mark Miller who cared for her when she broke her arm the summer before her departure in 2014, was very interested at that time in the prospect of tendon transfers in her lower legs to help her balance and walking to be easier and more comfortable. He remembers her and is still willing to care for our sweet Joan! This will likely start with PT and serial casting at the wonderful Shriner's Hospital that provides free care for their patients! We praise God for this door that he opened so easily just for the asking!!!

The surgery itself will have to take place at SLCH due to her weak breathing muscles and will be costly and followed by some days in the hospital recovering. Her neuromuscular specialist is at SLCH and it is likely she will need sleep study evaluations, cardiac work-up and pulmonary function evaluations, as well as some type of night time oxygen therapy.

We are committed to care for this special one that God loves and created for a meaningful purpose. Please give as you feel led by Him who has provided all!

Thank you. 

Dr. Becky Bullivant, Joan's pediatrician