“We want share our story and inspire others” says Karen McLaughlin.
It wasn’t until Karen’s son, Nico, was two years old, when she started to realize something was wrong. As a child, Nico was thought to have failure to thrive. He had pneumonia and low platelet counts, as well. Karen and her husband, Bruce, immediately brought Nico to Children’s Specialized Hospital in Hamilton, New Jersey, to be professionally evaluated.
There, they met with Dr. Tori Bronaugh; a psychology therapist, and Ina Myers; a psychotherapist. Nico received a therapy evaluation- for walking, talking, eating, and more. He also participated in a food observation study; unfortunately Ina did not find anything concrete except that Nico was a picky eater.
“The doctors and therapists at Children’s Specialized Hospital were amazing,” says Karen. “I remember thinking I did something wrong because he was not growing but they were able to give me techniques to help him and always reassured me.”
After months of misdiagnoses, Nico and his family were finally able to get the answers they were looking for.
Nico, a fun-loving boy, was diagnosed by doctors at the Cancer Institute of New Jersey (CINJ) with a rare autoimmune disease called Evans Syndrome, in which the immune system destroys his own red blood cells, white blood cells and platelets. On top of having a rare autoimmune disease, he was also diagnosed with Idiopathic Thrombocytopenic Purpura (ITP); which is a disorder that can lead to easy or excessive bruising and bleeding, as well as Neutropenia.
“Children’s Specialized Hospital guided us through our journey, leading us to the doctors we needed, to help our son and for this, we are very grateful,” says Karen.
Although it is estimated that less than 1,000 children in the world have this rare disease, “we try to make the best out of Nico’s situation,” says Karen. “Every day is a new adventure. We also collect toys. Every time Nico has a doctor’s appointment, he brings a new toy to donate. So many people have helped us; we wanted to start giving back.”
Nico is currently receiving experimental treatment at CINJ and although his treatment is still unknown, he does not let that affect him.
Karen’s greatest hope for Nico is that “he can make something of his disease.” Nico loves animals and loves to play with his older sister, Mikayla. “I just want Nico to be kid.”
Nico is has shown Children’s Specialized Hospital what it means to be a true fighter and he has already made a big impact in the health care industry. September 21st, of each year, is designated “Evans Syndrome Awareness Day” in New Jersey for Nico McLaughlin, and the other children who are fighting this rare disease.