Not only do we have one with a chronic illness but now we have two, and they are not related, both rare, and have cause for many visits to doctors. Our 11yr old daughter  Alivia who has been sick on and off since 2016 started to doctor since she was experiencing her symptoms more often Sweaty, dizzy, nausea, stomach pains, heart racing, her body hurting all over  (Legs, arm, shoulders, face, knees), can’t touch her skin, chest pain, headache. She Is seeing a neurologist and started having a lot of tests tilt table test, sweat test, lots of labs. They discovered she has Small Fiber Nephropathy with an antibody TS-HDS which means its auto immune related (they know her immune system is overactive and attacking her own body. She has since gotten worse and was receiving steroid infusions to try calm her immune system down. She continued to get worse missing a lot of school feeling awful. Life was going on around her and she was still. She was recently admitted to Lurie Children’s for three days for 2 days of IVIG treatments which she will now continue to get every three weeks she is also on two medications one 3x a day and one 1x a time a day. This will also be a lifelong condition for her. She has started Physical therapy at Marion Joy, she will be seen in Shirley Ryan ability clinic for an extensive pain clinic program.  She was also diagnosed with pectus Excavatum which is a breastbone deformity she is have chest pains from this and they are not sure if the small fiber nephropathy is making is worse She is going for an Echo and going to see the Pectus Doctor December 2nd earlier then our May appt. They can correct it but not 14/15 years of age. When she feels good, she is active child both these issues have slowed her down over the last year. We are making a trip to Mayo in MN to get a second opinion. This has been really hard to watch for all in the family. We once had a active, social child who now has more bad days then good. It seems to be debilitating. She is barely attending school, she has been approved for Home Bound tutoring to try to keep her on track to finish the 6th grade.