Jeremiah Gracen TK2D Warrior 4th Annual Recognition

Information From  https://www.tk2dfoundation.com/about-us
After months of jumping from specialist to specialist who ran test after test searching for answers for the weakness in then seven-month-old, Jeremiah, Aneesa (mom) got a dreaded answer on September of 2019, Jeremiah Gracen was diagnosed with TK2D, Thymidine Kinase 2 deficiency. This rare progressive devastating disease affects the ability to eat, breathe and move. Aneesa googled the disease and was heartbroken. All she saw were sad stories, death and the words no treatment...no cure...Her son had an extremely rare progressive inherited mitochondrial disease and enzyme deficiency that affects less than 200 people in the U.S.
“They handed me a sheet with his diagnosis and some mito resources, said he had a few months to live and told me to get in touch with hospice,” said Aneesa.
At the time, Jeremiah was one of the youngest TK2d patients in the world – with early onset often leading to worse outcomes. He was also the first African American male that was known to have it. Aneesa said she cried for three solid days.
It has now been 4 years since Jeremiah’s diagnosis. Despite a grueling regiment of medication, tracheostomy tube clears, gastrointestinal distress, feeding tubes and more, the world can see Jeremiah, though YouTube and social media posts, as a generally happy toddler who loves playtime, singing, his family, wiggling rhythmically to music and his expressive eyes fuel hope across the world. 
After a hospitalization scare left him with two collapsed lungs, mom set out to desperately save her son's life and make his story public hoping that the right researcher, doctor or even investor would see.  Jeremiah was fortunate enough to be accepted into a groundbreaking clinical trial for the disease and Aneesa stepped up to advocate in any way she can. She is a Grant Writer, Business and Marketing Consultant, Consumer Peer Reviewer for the Department of Defense, Support Ambassador for The United Mitochondrial Disease Foundation, Parent Ambassador for the American Academy of Pediatrics,  Member of the Medical University of South Carolina Patient and Family Advisory Council and a devoted mother of four boys including Jeremiah.
“When I talk to decision makers, I want to paint a picture,” said Aneesa. “We’re talking about the ability to eat, to breathe, to walk. I want them to see the human side of things -- to appeal to the person under the uniform.”
TK2d has taken much from Aneesa and her family; her career, time with her other three sons, even her bed, as she now sleeps on the couch next to Jeremiah, waking every hour to two hours to care for him. Some nights she doesn’t get sleep. 
But it’s not a fight she’s willing to lose. “I never knew really how to love my kids until Jeremiah,” she said. “I have dreamed of him running and talking. My ultimate dream for him is simply to get better in God’s timing. But we also have to remember faith without works is dead.”
“I do believe there will be a cure one day. People like to think of a cure as ‘abracadabra,’ but it doesn’t always work like that. You need a foundation to build things on. Just like those building blocks Jeremiah loves to play with. His story is part of the foundation.”
Jeremiah has quite the following on social media and mom donates the funds to support research and advocacy for the cure. “If people use social media to finance fancy lifestyles and material things, then I can use it to help not only my son, but help others live.”