Brianne Trechter
Spokane, WA
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
The Dravet diagnosis hit us like a ton of bricks. After multiple seizures and hospitalizations I had been doing my own research and come across Dravet Syndrome. I had a strong gut feeling that it was what we were dealing with but the doctors kept saying they thought it was less severe. Then during one hospitalization the on call doctor started talking about how she had Dravet Syndrome and even though I had felt it coming, the delivery of diagnosis was very difficult to work through.
What are some of the biggest challenges you’ve faced as a caregiver?
Being a caregiver to my daughter with Dravet can be extremely overwhelming. The heavy weight of making life altering decisions for her takes its toll. At times it is completely draining and exhausting just making it through each day.
How has Dravet syndrome impacted you and your family's daily life and routine?
We try not to let Dravet Syndrome control our lives but it often takes center stage anyway. The stress and worry over seizure triggers often zaps the fun out of family outings. Routine is extremely important in making sure that meds are given on time. My husband and I rarely get to go out on dates because we can’t just hire a babysitter. Sleep is extremely important so staying out late for special events is not advisable.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Rely on the family network and parent support group. Do your own research. Early intervention. Grieve the life you thought you’d have with your child but be ready to embrace the joy and beauty of your child just as they are. Try your very best to enjoy all the moments you have with them.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
- Dravet Syndrome Foundation
- Chelsea Hutchison Foundation
- Danny Did Foundation
- Instagram rare disease community
- Once upon a Gene Podcast
What moments or achievements have brought you hope and joy despite the challenges?
- All of the milestones
- Finally walking at nearly 2 years old
- Potty training!
- Going to preschool
- Make a Wish trip to Give Kids the World and DisneyWorld
How do you manage the stress and emotional strain that comes with caregiving?
- Therapy!
- Friendships
- Family support
- Self care
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
- Information that led to diagnosis
- Website full of information
- Dravet specialist connection
- Patient Assistance Grant Scholarship to attend conference
- Community- I say fairly confidently that the information I gained from experienced parents has likely saved my daughters life more than once
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
This is the most amazing community that you never wanted to be a part of. If we have to live with a rare diagnosis I’m sure glad it’s this one due to the support and progress of DSF.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
Receiving care packages in the mail for my daughters birthday and different functions we’ve attended online always makes me feel supported and cared for.
