This #MemberMonday meet our newest staff member, Jenny Gallo!
Jenny has been an active fundraiser and advocate for Dravet syndrome since her daughter Lena was diagnosed. She officially joined #teamDSF as a Parent Ambassador for the Northeast Region representing the northern New Jersey and New York City area in 2018, and we are thrilled to have her joining our staff this month as our Administrative Coordinator!
|Tell us about yourself and your child who has Dravet syndrome.|
|Born and raised in Morris County NJ, I currently live with my partner Dennis and my daughter Lena who has Dravet syndrome and Autism. I have a BA in Psychology and have worked in administrative assistant and project management roles throughout my life. I love to watch hockey and drive around in my jeep dubbed “hope” raising awareness wherever the road takes us. What brings me the greatest joy is watching my daughter develop each and every day and overcome some of the challenges she faces… slow and steady, but progress is progress!|
|When did the Lena’s seizures begin?|
|Lena’s seizures started at 8 1/2 months old. Genetic testing revealed a mutation of the SCN1A gene at the age of 2. She struggles with gait issues, talking, reading, writing, expressing herself. She has cognitive delays, autism, aggression and behaviors and intellectual disabilities.|
|What is your hope for Lena’s future? For the Dravet community?|
|Because our kids are constantly being interrupted and losing moments in time with each seizure, my hope and motto is “a cure for more moments.” While we wait for a cure, I wish for our children to lead healthy, comfortable, fulfilling lives. I advocate in all aspects for them to have a better “quality of life” while waiting for that cure.|
|What advice do you have for newly diagnosed Dravet families?|
|My advice to newly diagnosed parents is to take each day as a blessing. Try to find the good in each and every day. Some days it may seem like a horrible day, but I bet you can find the good in at least one of those moments if you break down the day. Each of our children are different than the next, each of us handle our stresses different than our neighbors, but this community of ours is strong in love, compassion and encouragement. This Dravet Family that you are now a part of can help you in so many ways and we are here to support you! It will seem hard, but don’t forget about yourself. We as caregivers are no good to those we care for if we are not taking care of ourselves. This is easier said then done, but it is important that you do something for yourself and for that special partner in your life. Whether it is your husband, wife or partner, don’t lose site of your relationships within your family and extended friends and family.|