Help Baby Kamogelo Molefi fight this rare genetic disorder

Our son Kamogelo was diagnosed with this rare genetic disorder in December 2018, after he was born with a deficiency in a Sodium / Potassium called KCNT1 gene that mainly causes uncontrollable seizures. Our son faces further developmental issues in the form of a lack of mobility, a lack of awareness and developmental delays. He is currently fed through a tube attached to his stomach. We have been struggling with our sons condition since his second day of birth. There isn’t enough research or literature about our sons genetic conditions in South Africa. Our son was battling so severely due to complications caused by his genetic disorder that the doctors encouraged us to sign an end of life form. He was on the brink of death and he miraculously fought for his life and started breathing on his own again. Our aim is to raise enough funds to have him treated at Utah children’s hospital that specializes in genetic epilepsy. Through that we want to raise awareness about genetic epilepsy which we believe not enough has been done in South Africa and there could be many more Kamogelo’s out there who don’t have the same voice or platform as us. Time is running out for our baby we plead to everyone to help us raise enough funds so that he can overcome this illness.

Links to follow for more information:

The Article: https://www.news24.com/parent/baby/toddler_1-2/time-is-running-out-for-baby-kamogelo-as-he-battles-rare-genetic-disorder-20200921

Interview with parents and baby: https://www.enca.com/life/family-raising-funds-treatment-rare-disease

weblink: http://helpmolefi.baby/