The world said hello to Estelle “Stella” Linderman in November 2019. On April 13th, 2020, when she was 5 months old, she had her first seizure. On April 27th, 2020 she received the diagnosis of CDKL5 Deficiency Disorder (CDD). After further genetic testing, it was shown that Stella’s specific condition was not hereditary, but instead “de novo,” meaning it occurred spontaneously during conception, and was not passed down from her parents. Team Stella Strong was officially established, and we have been coordinating for a cure, coordinating for her happiness, and coordinating for a chance for her future independence ever since.
Stella Update June 2022
Who is Stella? Stella is a beautiful 2 1/2 year old who is the first daughter of Jessica & Greg; first granddaughter of Joe & Nancy Mandelbaum and Dick & Jane Linderman; and first niece of Sam & Kelsey Mandelbaum and Sara Linderman.
Stella was born a perfectly happy and healthy baby with no pregnancy complications, and for the first 5 months of her life we were the happiest we have ever been as a family. Stella had her first seizure on April 13, 2020 and on April 27th, 2020, we received the forever changing news of her CDKL5 Deficiency Disorder (CDD) diagnosis. CDKL5 is a rare genetic disease that causes both daily seizures as well as severe developmental impairments. There are currently no definitive drugs or treatments available to manage CDKL5 kids’ seizures to give any sort of break. There is such a wide range of development success rates that there is no way of knowing where Stella will land on the spectrum--meaning we don’t know if she will ever walk or talk. We have been working tirelessly to get Stella all of the resources necessary to line her up for future independence and happiness.
