My daughter been on the list for a year now and the person that is in charge of recruiting in houston for Gene therapy for rett I can't even get a hold of any one at all I been calling there is 5 spots available and the doctors can't even call us and talk to us at all why is it so Hurd for the neurologist to call and see where we stand on recruiting our children they just ignore me not calling back and not giving me any info Just sad 😔 We believe in doctors but they take our kids as jokes and it hurts how simply they don't care as simple as a phone call
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Is there any gene therapy for Ethylmalonic encephalopathy?
My daughter been on the list for a year now and the person that is in charge of recruiting in houston for Gene therapy for rett I can't even get a hold of any one at all I been calling there is 5 spots available and the doctors can't even call us and talk to us at all why is it so Hurd for the neurologist to call and see where we stand on recruiting our children they just ignore me not calling back and not giving me any info
Just sad 😔
We believe in doctors but they take our kids as jokes and it hurts how simply they don't care as simple as a phone call