We spent 5 years at Valley Children's Hospital in out patient Rheumatology, Neurology, Naphrology and Genetics. Then they thought my son had mitochondrial disease. He was urinating blood around that time. They put him on high doses of levocarnitine. In 3 months he gained 30 lb. Prior to the levocarnitine he was very, very thin. After the levocarnitine he started having high BP and developed an irregular heartbeat. I took him off the levocarnitine. VCH referred him to UCLA. That's where he had a second genetics test. There they found he had SNX27 gene mutation. The resident who told us seemed very excited. Said we'd follow up in a year. Then covid happened and we never heard from them again. My son has such bad pain he has been treated for suicidal ideation. I took him to get Ketamine therapy locally because he told me he was going to hang himself outside on the backyard swing. Since his 6 sessions of ketamine 18 months ago he has not been suicidal but continues to have severe muscle weakness, difficulty walking, peripheral neuropathy and while he used to have flat feet, he suddenly has extremely high arches. No one has answers for us. Seems like no one cares. His counselor told me I cannot allow him to b in pain. But doctors refuse to give him anything but gabepentin and nails that don't work. So he just cries. I remember him being 3 and refusing to walk cause his legs were already hurting. He saw a psychiatrist at UCLA also. Very nice guy. I have volumes of medical info. But no answers.