Amy Lopez
Tyngsborough, MA
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
Yes
What are some of the biggest challenges you’ve faced as a caregiver?
Finding respite, managing behaviors
How has Dravet syndrome impacted you and your family's daily life and routine?
Behaviors cause the most stress in my family. We have found ways to be there for each other individually and as a family. We try to take small day trips together as long vacations are not possible.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Find your people, your tribe! Reach out the DSF and your region support group. Ask questions! Educate yourself as much as possible. Go with your gut! Find the right specialist that supports you and includes you every step of the way. It’s ok to say no if you don’t agree with the Drs plan.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
Of course you know that the DSF has been my family since day 1! It’s the only place you will find unwavering support and understanding. There is no where you can go to share and get advice from families at all stages of this journey from all over the world the get it!
What moments or achievements have brought you hope and joy despite the challenges?
Every goal, milestone, accomplishment my son has is a great win in our eyes. We celebrate big and small stuff! Birthdays are huge for our son as we know every year, every day with him is a gift!
How do you manage the stress and emotional strain that comes with caregiving?
My husband and I are a team. When my son is challenging us we support each other as we know we are both going through it together. That’s no point in blaming each other or getting upset with each other.
We give each other time to be with friends or participate in hobbies or other events that we enjoy. Team Lopez!!!
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
The DSF has helped me and my family by providing endless support and resources. This support has come in many forms including financial so that I have been able to attend the DSF conferences.
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
No you’re not alone! Seek us out and we will be there for you in any way that you need. Get involved! Being part of this community has given me a sense of purpose to why we are in this journey.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
There are so many but the most empowering is being at the conferences and being with my people.
