Ep 19: What Would You Do If Your Child Got A Rare Disease?
This episode is all about helping this momma get through a very difficult time in her and her family's life right now. This whole hour will be focused on Kathure’s family and her daughter, little Beautiful Ayah. Last November, Ayah got diagnosed with SMA which stands for Spinal Muscular Atrophy. SMA is a very rare disease and 1 out 10.000 children get diagnosed with this disease every year. It is so rare that Denmark has not approved the treatment for it since they only get 2 cases every year. Kathure has to go outside Denmark to get the treatment for a gene replacement therapy called Zolgensma, which will cost them 2million USD out of pocket. As a parent and especially an international parent, I wouldn’t even know how I would handle this kind of news. Kathura is a strong woman and she is raising money to save her daughter's life. I want to do my part and help spread the news about SMA and have my voice be part of the cause and help Ayah have a normal life. Let me introduce you all to Kathure Mithika, an international mom from Kenya.