Welcome to Marissa's Personal Fundraising Page
Even though we are apart, we must remember that we are stronger together. Join me in supporting the sick kids at Duke Children's who need our help now more than ever.
Marissa (almost 14, her birthday is this month) started having seizures about 6 years ago in 3rd grade.
Her younger sister had epilepsy and I knew that she presented similar symptoms.
It took over 5 ER trips, many EEGS, testing and 9 months to actually get her diagnosed at Duke Children's EMC with Epilepsy.
Over the next couple of years it was very difficult. She ended up falling at school, hurting herself, being home-bound from school, losing friends, struggling academically, getting more depressed, LOTS of therapy, hospital stays to figure out the right balance of medicine and much more to get things stabilized. We eventually did some genetic testing and also realized Marissa has PCDH-19 gene mutation.
I started doing research on PCDH-19 and found quite a lot of information out there. There is a national group and FB group. This was the start of trying to really connect with other people that were similar to us. It also started a domino effect of getting connected to more Epilepsy groups locally. We joined the Local Epilepsy Group, started going to group meetings and events. Then we found out the National Epilepsy Foundation has a Kid's Crew Group! This was more exciting to meet other kids HER age just like Marissa. From there we started making friends and found our place.
Presently, we do still struggle with major anxiety, medicine side effects and academic struggles but Epilepsy has not taken over our life. Unfortunately we know that Epilepsy does NOT have cure and are not saddened by this development. As a family we strive to see the positive in life struggles it has helped Marissa grow and succeed. We are now part of the Duke Children's Ambassador Program, UNC Patient Family Advisory Board, PCDH19 Alliance, Epilepsy Alliance of NC, Epilepsy Foundation Kid's Crew and Triangle NC Epilepsy Organizations to help provide support where we can. Marissa is thriving to the best of her abilities and wants to be a Vet when she grows up.
We couldn't be more thankful for the countless hours that doctors, nurses, child-life specialists and other professionals did to help Marissa. By giving back to Duke Children's you are helping out the people that helped us out. We couldn't be more thankful for them!!!
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