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Families

15 Jul A Day in the Life of a Family Living with SLC13A5 – Windisch Family

July 15, 2020 in Families

Nicole and Rich are the parents of Meredith (2-years-old), who has SLC13A5 Epilepsy. James (16-years-old) and Matthew (12-years-old) are Meredith’s older brothers. A Day in the Life Meredith is our little chickadee, as her daddy calls her. She is always smiling and ready to go. She loves...

23 Jun A Day in the Life of a Family Living with SLC13A5 – Geslin Family

June 23, 2020 in Families

Maria is the mother of Alice (5-years-old), who has SLC13A5 Deficiency. Maria and Alice live in Luxembourg, with Alice’s father, sister, and maternal grandmother. A Day in the Life Alice is our rare pearl – this is what we call her, since SLC13A5 Deficiency is so rare....

19 May A Day in the Life of a Family Living with SLC13A5 – Prestine/Pae Family

May 19, 2020 in Families

Erika and Andrew are the parents of Ellie, who has SLC13A5 Deficiency. Our days with Ellie (who is almost the big 4!) are typically filled with a lot of love, patience, and laughter. We like to call her our little Sour Patch kid. She is full...

06 Jun A Day in the Life of a Family Living with SLC13A5 – Vattikuti Family

June 6, 2019 in Families

Prasad and Anu are the parents of Sanjitha, their daughter, and Abhinav, their son, both of whom have SLC13A5. By 6:00 am, we start the process of getting our kids ready for school. We help them go to the restroom and brush their hair. They like...

09 Apr The Windisch Family’s Experience with SLC13A5 Deficiency

April 9, 2019 in Families

by Nicole Windisch Our daughter Meredith Grace was born on January 10, 2018. Within 12 hours, while Meredith was in the nursery, a nurse noticed she was losing oxygen. She was immediately taken to the...

31 Aug A Day in the Life of a Family Living with SLC13A5 – Grover Family

August 31, 2018 in Families

Maureen Grover and her husband, Hans, have three children, Landon, Brayden, and Alaina. Both Brayden and Alaina have SLC13A5 Deficiency, and the severe epilepsy and developmental delays that come with that. Here is a glimpse of a day in the life of a family living...

19 Jul Different – A Memoir by Lily About Her Sister, Tessa

July 19, 2018 in Families

Hi my name is Lily and I am 11 years old. My siblings, Tessa and Colton both have SLC13A5 Deficiency, which is more commonly known as seizures. I love both my siblings and only hope for the best for them and other people like them....

25 Jul The Nye Family’s Experience with Citrate Transporter Disorders and SLC13A5

July 25, 2014 in Families

My husband, Zach, and I live in Menlo Park, California with our four kids. Two of our four children have SLC13A5 mutations....