What Families Affected by Dravet Wished that Everyone Knew

Dravet syndrome (DS) is a diagnosis that nobody wants to receive for their child. This is a difficult journey for any family and literally turns life as you knew it upside down. As a parent, you are struggling to learn about this rare condition that your child is never going to outgrow and which impacts every aspect of their lives. Each day you have to make multiple decisions to keep your child safe and these are often difficult choices with no straightforward answers. You struggle with anxiety, grief, and the many unknowns of living with this disease.

As author and life coach Steve Maraboli said,  A kind gesture can reach a wound that only compassion can heal. While my DS family has been invaluable for support and advice over the years, I have also been fortunate to have some good friends and family members who have really stepped up and tried to help my family throughout this journey. If you are trying to provide support to a family living with DS, here are some things (from my perspective) that they might like you to know.

Don’t minimize my child’s disease by saying they “look good” or will probably “outgrow it”.

I realize you are just trying to lend support, but that can feel dismissive with all that my child is going through. While my child may not look sick, Dravet syndrome (DS) will continue to affect them in multiple ways throughout their lives. Prolonged seizures or seizure clusters require emergency intervention and frequent hospitalization. Subclinical seizure activity may make them fussy or make it difficult for them to focus in school or at home. Cognitive delays may impact their decision making and social interactions. Behavioral issues may frighten other children or frustrate adults who are caring for them. Even our \”good\” days are not easy.

Don’t assume my child’s behavior is because they are a brat or because I don’t know how to parent.

Up to 80% of patients with DS have tested positive for a mutation of their SCN1A gene. While our community’s goal is a one day have a cure, current treatments offer limited control. In addition to the seizures, patients have many other associated health conditions. Multiple medications and side effects, blood draws, diagnostic testing, and multiple visits to doctors, specialists and therapists are all a part of our daily lives. Most days, my child goes through more than a healthy person would on their “worst” day. Kindness and empathy for the fact that both he and I are doing the best that we can is very much appreciated.

Dealing with DS is scary and socially isolating.

Being a caregiver for someone with a chronic and severe medical condition like DS is exhausting, mentally and physically. Frequently the demands in caring for someone with DS affects the caregiver’s time for pursuits other than childcare. Many parents have had to quit their jobs or choose a job that was less demanding. Free time to enjoy time with friends or for activities you enjoy can become limited or non-existent

While awareness continues to improve, there are still many medical professionals who have never seen a patient with DS and may not be versed in treatment options. The burden of understanding DS and finding resources often falls to the family. DSF\’s private parent & caregiver online support group offers vital support and information. But, we still want and need our relationships with friends and family. Check in with me, but please understand if I am not in the mood to talk or have to cancel plans at the last minute. That is not a reflection on you or on our relationship. I am just often dealing with a lot of heavy things regarding my child\’s disease and care, and sometimes I need to take time to process them all.

Listening goes a long way.

It is difficult to find the right thing to say when you hear about a family you are close to is now facing a tough diagnosis and many unknowns. Often, the most helpful thing is to just to listen and try to understand what they are going through. Our families face an ongoing cycle of grief that can be triggered by a variety of things. Heartfelt words of support and encouragement, especially during the particularly hard times are priceless. We don’t expect you to understand everything we contend with but we appreciate you making the effort to be there for us and showing you care.

Don’t stop telling me about your family’s successes. I still want to share those with you.

I don’t want you to feel guilty because your child is not sick and I don’t want that to be something that creates a wall between us. While it might sometimes be hard for me to watch your child do things that my child can’t, it doesn’t mean that I am not genuinely happy for you or that I don’t want to share in your life.

Include our family in your plans.

As a DS parent, you constantly worry about seizure triggers, exposure to illness, behavior, and more. We often have to make a tough decision to avoid situations to keep our child from having a seizure, limiting our social interactions and fun. Just because our lives are fraught with challenges doesn’t mean that we still don’t want to be invited to a birthday party or go out with friends. Those are the things that help me regain my sanity and remind me that Dravet does not completely control our lives. Don’t stop inviting us and don’t be angry or upset if we have to cancel last minute. Asking what you can do to make it easier for us to be a part of your plans and being flexible is priceless.

Offer to help with the little things.

Depending on the day, DS can have a moderate to severe negative impact on quality of life for the entire family. When your child can end up in the hospital with no warning, it is very stressful to not know how you will handle the details of day-to-day life while you are away. Being surrounded by a tribe who has your back makes a big difference. Things like cooking, grocery shopping, pet sitting, or helping with transportation for siblings can ease the stress and pressure for parents. While caring for our sick child, we don’t want healthy siblings to feel that their worlds are completely turned upside down as well. Any relief you can offer will be greatly appreciated and helps families feel supported when they need it most.

Allow my child to be included and allow me to educate others to make a difference.

I really appreciate it when you invite my child to be involved and when you are flexible in accommodating his needs so that he is able to participate. He has so many limitations on what he can do, but he loves being around people and having fun. I realize that it is easier to leave him out, so I really appreciate when you do what you can to include him and make him feel a part of your lives.

For all of us in the DS community, it is our love for our children that keeps us going. I realize that it might seem like all I talk about is DS. But, most of the time I feel like I am fighting for my son’s life. There is no cure and current treatments aren’t effective for him. When you can share your story, you feel better understood and have the opportunity to raise awareness of DS.  I know that the more people who care and who are connected through our community, the sooner we will get to a better understanding of the disease and more treatment options. And most importantly, an overall better quality of life for all DS patients.

helping hands holding family
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