Meet Nicolas from Slovakia – my newest HCU Hero!
Nicolas’s Mom, Eva, reached out to me and asked me to share his story. She tells me that he was diagnosed at 6 1/2 years old. At the time, he had poor eyesight, behavior problems, and was lagging behind. After being diagnosed with Homocystinuria, he was started on a treatment of priodoxine, vitamin D, flavobion, B12, folic acid, Cystadane/Betaine, and Milupa HOM2. He is also taking medications to calm down because he was diagnosed with ADHD, hyperactivity disorder.
He was prescribed a low protein diet. His allowance is 15 grams of protein a day. In Slovakia, it is difficult to obtain low protein foods. Eva has a cousin in Germany that helps them acquire these foods. Eva tells me there are only 13 other HCU patients in Slovakia, and they are not in contact with any of them. She is grateful for the support groups on Facebook which allow her to connect with other parents of HCU kids.
She describes Nicolas as a restless boy who is very interested in cowboys and Indians. His favorite actor is Steven Seagal. He loves hockey; his favorite player is Zdeno Chara who plays for the NHL’s Boston Bruins and is also from Slovakia.
I’m thrilled to dedicate one of my 2014 Boston Marathon miles to Nicolas!
If you’d like to make a donation to NORD’s HCU restricted research fund in honor of Nicolas, or another HCU Hero, please stop by my fundraising page for the 2014 Boston Marathon: