I have learned a lot throughout my journey that may be able to help you:

Your child has just been diagnosed with a MECP2 Duplication Syndrome, what do I do now?

• Get a letter from your doctor stating the disability 
• Ask doctor to refer you to a social worker, who can assist with what your child qualifies for in your state.
• Create a medical folder
  • create tabs for each doctor/specialist 
    • put a print out of what was discussed at the appointment
  • Create tabs for vaccination/lab work/MRI/EEG/CatScan, Etc
• Create a Resume- Use a resume template and change titles to meet your needs
  • Keep an updated copy in your medical folder and bring a copy to give to the doctor for their records. 
    • Childs name/Address/phone number/email address
    • Short description of diagnosis
    • List Specialty/Doctors name/phone number
    • List place of therapy or therapy company/medical equipment providers/nursing care provider- with phone numbers
    • Insurance Info- effective date/ID number/group number
    • List current medications and vitamins/dosage amounts
    • List past medications & vitamins
    • List Surgeries/Hospital stays- dates/length of stay/reason
    • List Allergies
    • Recap of Dr. Appts for easy reference.
• Contact your local ARC Chapter- www.thearc.org
• Have a team of doctors/specialists that LISTEN to your concerns and suggestions.
• Educate yourself with this disorder, you are your child's advocate
  • www.mecp2duplication.com
  • Visit www.401project.com for current research projects underway and join the fight!
  • Join MECP2 Duplication Family Talk on Facebook- ask questions and get loving support from friends who understand. 
• Research other medications, therapies, etc 
• Surround yourself with family and friends who care. This is a must! 
  • Lean on them for support, but not so much that you knock them over.
• It's okay to cry and breakdown. It's normal!
• Enjoy every single moment. 
• Don't let this disorder win!

My Final Advice:

NEVER LOSE HOPE!