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: