J
Jordache
Guest
Recently I was asked to be the West Coast Rep for PKU Global, a new non-profit organization with a vision to locate and unite people with PKU from across the world, and advocate for their treatment on coverage. PKU is the condition that I have.
Today I received a frantic FB message from a very fearful young Algerian mother named Sana. Sana has two boys ages 3 and 3 mos who were diagnosed late with PKU. This means her boys both have some irreversible brain damage as well as other neurological deficits. Because Sana only speaks French I wasn't able to talk much with her, but I can say from experience that a child at 3 who is late diagnosed likely doesn't walk or talk, has serious behavioral issues, possibly seizures, and other symptoms. Her baby is likely not reaching milestones, gives no eye contact, can't hold his head up, and other symptoms. Her infant is medically more likely to recover more fully simply because at 3 months old he has had much less damage. Sana is very concerned because in her country the diagnosis for PKU says something along the lines of "there is no hope. If your child has PKU, he/she will be retarded." Though this diagnosis isn't accurate any longer, it's still on the books. Gratefully, she has doctors who have at least some information about how to properly treat her children's condition. Unfortunately, it seems they have left her hopeless and she is very afraid for her boys longterm outlook. I have no idea about her faith, but considering her location it's likely she's got at least some Christian roots. Please pray for her and her family. Also, PM me if you be willing to help me communicate with her. I'm looking for someone to translate my messages into French.
Today I received a frantic FB message from a very fearful young Algerian mother named Sana. Sana has two boys ages 3 and 3 mos who were diagnosed late with PKU. This means her boys both have some irreversible brain damage as well as other neurological deficits. Because Sana only speaks French I wasn't able to talk much with her, but I can say from experience that a child at 3 who is late diagnosed likely doesn't walk or talk, has serious behavioral issues, possibly seizures, and other symptoms. Her baby is likely not reaching milestones, gives no eye contact, can't hold his head up, and other symptoms. Her infant is medically more likely to recover more fully simply because at 3 months old he has had much less damage. Sana is very concerned because in her country the diagnosis for PKU says something along the lines of "there is no hope. If your child has PKU, he/she will be retarded." Though this diagnosis isn't accurate any longer, it's still on the books. Gratefully, she has doctors who have at least some information about how to properly treat her children's condition. Unfortunately, it seems they have left her hopeless and she is very afraid for her boys longterm outlook. I have no idea about her faith, but considering her location it's likely she's got at least some Christian roots. Please pray for her and her family. Also, PM me if you be willing to help me communicate with her. I'm looking for someone to translate my messages into French.
