Starfish Days By Charlotte Egerton-Warburton (Age 8)

My name is Charlotte and I am 8 years old. I love ballet, playing tennis and making slime. I also like eating chocolate. I love chocolate so much that my dad calls me “Charlie Chocolate.”

I am  one out of five kids . My older sisters and brother are half siblings and I have a younger brother who is my real brother, named Rowland. He is six years old and was born with ADNP syndrome.

ADNP syndrome also known as Helsmoortel-van der Aa syndrome, is a complex neuro-developmental disorder that affects the brain. It is basically a non-hereditary disorder, related to Autism. That means it does not come from my family’s blood or genes. Having ADNP  is very rare. Only 205 people in the world have it. It affects Rowland’s brain and everything in his body.

Photo Credit Seastar

It is very hard to live with my brother because he can’t speak and say how he feels or tell us what he needs. I try to be helpful as best I can and I wish that I knew how he feels inside. When he tries to get attention or communicate with anyone,he often pulls hair, scratches and sometimes bites. It hurts but I still can get through it.

But living with Rowland can be good too. He is one of the best brothers because he is always happy and makes me laugh A lot of the time, I think that it must be hard to be him and that makes me sad. When I get upset  like this, I try to play with him and make him happy.

When Rowland  was little, my family was always trying to guess when he would reach a milestone like walking or talking. I told my mom and dad that he would reach his goals on a “Star Fish Day.” When my mom asked what this day was I told her, “It is a special day when he is ready.” I am so grateful because Rowland has reached many “Star Fish Days.”He is beginning to learn words like ball, pancake and bacon. He points to objects that he likes to play with. He is also being potty trained.

Rowland does not go to regular school like I do–he has a school program above our garage. I helped make it look like a classroom. He has many special people that work with him. Rowland also has physical therapy, speech and occupational therapy. At home, he has a lot of ABA, which is behavior therapy that helps him learn life skills.

I want to help my brother by giving support and love. I even went to The Seaver Center for Autism at Mount Sinai hospital to give blood to be part of a study to help him and other ADNP children. My hope is for trillions of Star Fish days and for the doctors to find a cure for him.

It makes me sad when people look at him and think that he is different as if that is a bad thing. My brother is different and that is what makes him special.

 

This “Siblings Flaunt” has been published in partnership with the fabulously flaunting organization, Siblings with a Mission

2 Responses to “Starfish Days By Charlotte Egerton-Warburton (Age 8)”

  1. LibbyMarch 28, 2019 at 10:35 pm #

    Charlotte, you are a wonderful big sister to Rowland and you are so lucky to have each other. And a fabulous family; parents and older siblings. Wishing you many Sea Star days!!!

  2. TRMarch 28, 2019 at 12:03 pm #

    Wow, what an amazingly heartfelt story from a special big sister. I am hoping for a trillion starfish days for Rowland as well!

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