Aleesha is 3 1/2 years old, born July 5, 2022. She was born full term and healthy, just like any other baby, and has always been a happy child. Until she was 18 months old, she could feed herself, playwith her toys, and even pull herself up to move around. She was able to say a few words, including “mama.” Around the 18-month mark, her progress suddenly halted. She began to quickly lose her ability to hold objects and control her movements, along with struggling to chew food and speak.
We took her to see a pediatric orthopedic specialist; after conducting X-rays, everything appeared normal. We also consulted with a pediatric neurologist who ordered a brain MRI, which also showed no abnormalities. Following that, the neurologist recommended early intervention and genetic testing. After a long eight-month wait, we received a call with the devastating news that Aleesha has Rett syndrome. Rett syndrome is a mutation to the MECP2 gene on the X chromosome.
This diagnosis hit us hard as parents, as we had no prior knowledge of the condition. We immediately scheduled appointments with all the recommended specialists and turned to online support groups to learn and do everything we can to help support Aleesha throughout her journey. Things are never easy for Aleesha, as she has very limited mobility. Rett syndrome also brings her many other issues, such as absence and nocturnal seizures.
While Aleesha has many struggles every day, she is happy and smiling. She enjoys going to Pre-K and playing with all her friends. She loves going to the park, the mall, or to anywhere there are kids for her to interact with. At home she loves watching Minnie and Mickey Mouse while also playing with her interactive toys.
We are very honored for Aleesha to be selected as a recipient for the Shannon Daley Memorial Fund. We have plans for her to get a Tobiieye gaze device to help her communicate better and different medical equipment to help her daily life. Aleesha has lots to say, but few ways to express it. Thank you from the bottom of our hearts. The Nistico Family.
