Alyssa de Jong

Alyssa de Jong was diagnosed April 2013 at the age of 10 with Koolen-de Vries Syndrome. Alyssa has the micro deletion in 17q21.31. Prior to the diagnosis, we had wandered from doctor to doctor, specialist to specialist with no answers, help or hope. We were constantly told each of her issues were unrelated. Heart issues, estropia, hypotonia, developmental delays, sleep problems, not growing, seizures, the list goes on. From the day she was born, it felt like something was not quite right. There were just too many issues to believe they all added up to nothing. Developmentally she was so behind other kids. She didn’t walk, talk or do anything even close to what other kids were doing. The frustration of feeling something is wrong with your child, but having no knowledge of what or why was at times overwhelming.

In May of 2012, we were told the four words no parent ever wants to hear, “Your child has cancer.” Alyssa was diagnosed with melanoma. We were sent to St. Jude Children’s Research Hospital. Alyssa was treated for Stage 3a melanoma through many tests, surgeries and procedures. St. Jude took care of the cancer, but her oncologist, Dr. Pappo, was curious as to her many medical issues. Through the cancer treatment he even added a few more to the list such as scoliosis, cervical stenosis, and a second heart problem. He told us, these must be connected and he would find us an answer. Less than a year later, he delivered on that promise as he gave us the diagnosis of Koolen-de Vries Syndrome.

Alyssa has managed to amaze and surprise doctors and teachers alike. She takes each medical issue in stride and doesn’t let it stop her from doing what she wants. Despite what just about every standardized test will tell you, Alyssa is in fifth grade performing at grade level in just about every subject. Although she still struggles in math and science, she is an above average reader, writes at grade level and gives speeches in class. She is a girl scout and was the top cookie seller several years running. Her height has given her struggles in playing sports, but she discovered golf a few years ago and has hit her stride. Alyssa is also learning to play the piano. She has a flair for theater and has performed in several camp performances. This February she will make her debut in her middle school production of “Annie” as a cast member. My mother said once, “Alyssa’s limitations will be put on her by others.” This has been proven to be true. Luckily, Alyssa doesn’t care what others think.

Girl with Koolen-de Vries Syndrome standing with her parents and brother

Alyssa has a younger brother, Luca who is 8 years old. He has learned compassion and patience beyond your typical 8 year old kid. He is constantly pushing Alyssa to be more active and achieve more goals. He gave up his birthday gifts to help the kids at St. Jude. He looks up to his big sis, but also looks out for her. Having a sibling opened Alyssa up try other things she would not have done on her own.

Alyssa has become very active in spreading the word and helping others. In June, she represented St. Jude Children’s Research Hospital in Washington, D.C. for Family Advocacy Day. She told her story to many government officials and thanked them for pushing pediatric research funds through Washington. Her St. Jude Heroes team raised over $25,000. After enjoying the most amazing wish (Alyssa’s Wish) she is hosting a birthday party to help raise money for Make-A-Wish. She shares her story in hopes of raising awareness for melanoma and sun safety. Her story was featured on a blog for the Melanoma Research Alliance (Alyssa’s Melanoma Story) and also was a part of a Melanoma story for St. Jude (Alyssa St. Jude).

Alyssa has become an advocate for others and herself. You can read more about Alyssa and her journey on her blog or on Facebook.