Tina McDermott
Davenport, IA
Can you share your journey of receiving your loved one’s diagnosis of Dravet syndrome?
Ryan was not diagnosed until he was 6yo. The Neurologist at our home hospital never brought up Dravet Syndrome and always said,”Your son is a mystery, see you in 6mo.” She never shared Ryan’s case with the hospital TEAM and had she Ryan would have been diagnosed at 2yo! Her reason for not thinking he had Dravet was that he responded to Carbamazepine and looked no further. I pushed every appointment to get her to do other things and she didn’t listen to me so I wrote my own letter to Mayo Clinic along with a photo and they reached out a week later with 5 days of tests. The Neurologist had it on the top of her list just by our first appointment! Two months later on April 19th, 2012 I got the call that he indeed had Dravet Syndrome. I was pretty sure after researching it that would be the answer. My first reaction was relief that we finally knew his diagnosis and my second was to slide down the wall and have a meltdown.
What are some of the biggest challenges you’ve faced as a caregiver?
I would have to say wondering when the next seizure or status episode was coming and when he would end up being med flighted to Iowa City for another stay in the hospital being pumped full of medicine! It took a while to figure out what exactly would help him survive.
How has Dravet syndrome impacted you and your family's daily life and routine?
Thankfully we had in home nursing and respite care so we could still work and run errands when needed. He also had 3 older siblings living at home and they were amazing and still are! When I was at work I knew he was in good care but I always had my phone right next to me. Ryan was nonverbal and nonmobile so yes he was a little extra work but I always had help if I needed it and I’d do it all over again if I could!
What advice would you give to a new caregiver whose loved one has just received a Dravet syndrome diagnosis?
Follow Neurology orders but don’t ever be afraid to speak your mind! You are the very best advocate for your child! You are the one with them and your input matters! Unfortunately the first Neurologist Ryan had had a huge ego and didn’t take anything I said into consideration. She was fired by ME as Ryan’s Doctor after his diagnosis. I didn’t mess around!
Are there any specific resources, organizations, or individuals that have been particularly helpful to you?
DSF (MaryAnne) was the first organization that reached out to me as soon as Ryan was diagnosed and they and all the Dravet parents were a Godsend for me! I didn’t feel alone and learned a lot and that’s why I’m here even though Ryan isn’t.
What moments or achievements have brought you hope and joy despite the challenges?
There’s so many! All I had with Ryan was HOPE, FAITH,JOY and so much LOVE! Taking him to St.Louis Cardinal games,NASCAR races in the infield with our camper, camping, going to several beaches, parties etc…Was it a tad difficult? Of course! You just prepare for anything and everything you can and put a little more work into it to make it work! My fears were there but I didn’t obsess about them.
How do you manage the stress and emotional strain that comes with caregiving?
Therapy and medication came first and has helped me ever since. You need to take time for yourself which I know is next to impossible but self care is so important! I’m still struggling with that part since Ryan’s passing. Read a good book. It will never go away but you can try things to alleviate some of the God awful challenges we Dravet parents have to endure!
In what ways has Dravet Syndrome Foundation (DSF) supported you and your family?
All around support! Phone calls, setting you up with someone that lives near by, resources, “Days of Dravet”, other families stories and my favorite, DSF Biennial Conferences! I’ve only missed 1 since 2012 when Ryan was diagnosed! And now look! I’m proud to be one of the Midwest Parent Ambassadors!
What message or piece of wisdom would you like to share with the broader Dravet syndrome community?
Our kids are all different in many ways so it can be a carbon copy for all but let them live their best life possible! Let them go places and see things even if they don’t understand all of it. Did Ryan have seizures when we were out? Absolutely! He would have done the same at home.
Can you describe a moment when you felt particularly supported by DSF and/or the Dravet syndrome community?
They were supportive with all the things listed above plus more from the diagnosis 4/19/2012-present. A moment that I was particularly supported by DSF and the Dravet Syndrome Community was when SUDEP stole Ryan 10/2/22. There was so much love, compassion, kindness, empathy and I was showered with memorial gifts that I will cherish forever!
