Posted on March 6, 2019 by Greg MacKinnon
HARTFORD – Newtown’s State Representative, Mitch Bolinsky participated in the 2019 National Organization for Rare Diseases (NORD) Advocacy Day at the Capitol last Thursday. After he welcomed attendees and pledged continued support for the treatment and research to conquer their rare diseases, Sandy Hook resident, Daniela Delgado, took the podium and captivated the crowd with her story of being a one of the 30-million people, half of whom are children, to have a rare disease and her amazing battle to help others.
“Daniela is an amazing young lady,” said Rep. Bolinsky. “Although just a sixth-grader, she has more than the courage to battle von Wildebrand Disease, a rare and serious bleeding disorder, and Ehlers Danlos Disease, that causes her joints to dislocate easily and triggers constant pain to her head, neck, shoulders, arms and legs. She has the drive to succeed in school and excel as a motivational speaker, spreading her special message of hope to others. She also is the founder and driving force behind ‘Daniela’s Little Wish’, a non-profit that ‘Bakes and delivers smiles around the world,’ providing free birthday cakes for kids with rare diseases and disabilities. You can find out more about her and her mission on Facebook, Instagram, Twitter and other social media sites.”
Daniela pointed out, “Rare Diseases are really not so rare, if looked at as a whole. There are 30-million people in the U.S. that live with one or more of the 7,000 known rare diseases. I actually have two. One of them causes almost constant pain and the other, the bleeding disorder, prevents me from taking pain relievers. Some days I cannot even go to school. I’m lucky though because I have an injectable clotting treatment that allows me to function pretty normally.” Daniela takes her clotting medication 20 times a month, at a per-treatment cost of $2,500 a day before insurance. Like so many rare disease sufferers, their prescription drug treatments come with staggering cost and, for 95% of rare disease patients, there is no FDA-approved course of treatment.
Bolinsky concluded, “Stories like Daniela’s make advocating for the 30-million rare disease sufferers in our country easy. Her courage is only topped by her energy and devotion to baking-up smiles for others and putting herself out there with her message of hope. I stand in strong support of NORD’s mission of bringing awareness about rare diseases and research to develop and provide affordable treatments.”
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