1. What is your name? Marilu
2. Where are you from? Mexico
3. How old is your child with JHD? 17
4. How old was your child when he/she was tested for JHD? 8 years and 8 months
5. How old was your child when they started showing symptoms? 18 months
6. Who did your child inherit JHD from, mom or dad? Mother
7. What were the first signs that made you think your child might have JHD? Seizures.
8. Did you notice any changes at school before your child was diagnosed? Yes
9. Does your child understand what JHD is? No
10. How is your child's behavior/progression now compared to when they were first diagnosed with JHD? she is in the final stage
11. Did you know what JHD was before your child was diagnosed? Yes
12. How was the testing process? For me, that was like a routine, just waiting for the results to be negative.
13. What professionals helped you and your family during the genetic testing process? No one.
14. What stage of JHD was your child in when she was diagnosed? I believe in the second stage
15. Does your child have the help she needs at school? No
16. Are you part of any support group? Yes
17. Do you have other children at risk for HD/JHD? No
18. How do you explain JHD to people? It is the disease of evil.
19. What is your biggest struggle as a caregiver for a child with JHD? My biggest problem is the lack of proper equipment on time, and I am tired of waiting.
20. If you could give a new caregiver some advice, what would you say? Be prepared to fight for your rights and not give up if you are denied anything you request for your child.