Siobhan Grevelding
Baldwinsville, NY
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
We received Lennox’s diagnosis when he was one and a half years old. This was after having his first seizure at 10months old. Lennox was admitted to the PICU when the hospital called the CHOICES team to our room to help explain what would come and gave us some local resources to reach out too.
What are some of the biggest challenges you’ve faced as a caregiver?
Changing my entire life style. Before I was a provider financially and now due to the medical complexities Lennox faces I had to quit my job and be his caregiver.
How has Dravet syndrome impacted you and your family's daily life and routine?
It seems like everything revolves around how Lennox is feeling, we use to frequent beaches and go on hikes and so much more but now due to the threat of illnesses we stay home more then often.
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Nothing is going to be “normal” ever again, it’s okay the grieve the life you thought you and your child would have.
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
Our local hospital introduced me to Ali and Harper our Dravet besties! Knowing Ali has been a blessing I wouldn’t have made it though hospital stays without her.
What moments or achievements have brought you hope and joy despite the challenges?
All the milestones and even the most simple things bring us joy… Trying to find positivity in every situation, even if it takes time.
How do you manage the stress and emotional strain that comes with caregiving?
Are far and few between moments I can escape for a little bit of peace and quite I use to recharge even if it’s only 5 or 10 minutes.
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
Connecting with other dravet families. I have learned so much about my self and helping others being a family ambassador. DSF always keeps us informed!
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
Give yourself grace the seizures are not your fault.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
Being able to join the caregiver connect and learning about the experience of other caregiver.
