Jeremiah Gracen - TK2D Warrior
Donation protected
On Monday 16th September 2019, seven month old Jeremiah Gracen was diagnosed with a very rare TK2-related mitochondrial dna maintenance defect.
He was a healthy baby until he reached five months. From there his muscles began to weaken and because doctors were unaware of the disease, they thought it was just him being lazy and that he would grow out of it. He went from being able to lift his head to not being able to lift it at all. He spends most of his time in his mothers arms.
The rare disease has no proven treatment or cure. As a matter of fact, every website, article or anything you will find will talk about seizures, heart weakness and death as the disease is a rapidly progressive one.
Learn more on www.tk2d.com and tk2cures.com. The scary part is at any minute his health can change for the worse, but we see life.
Mom spent every minute from diagnosis trying to find answers and was able to contact Dr. Hirano in Columbia Univeristy NY. He is the only doctor that knows the disease and is treating the first case of a boy who made international news - Arturito Estopinan.
Along with Modis Therapeutics a therapy has been discovered to restore cellular function called MT1621. Because the disease is rare, so too is this medicine. We were blessed enough to use $10K raised towards his first few NY trips and medication. He is now in the clinical trial so anything else simply goes towards items he may need, monthly travel and anything related to his well being. Mom does not work as she cares for him 24/7 along with his brothers. We also request prayer. Jeremiah Gracen is the sweetest happiest baby and his eyes show the Glory of God. Help us save his life, help us make strides in awareness of rare diseases, help us help others, share and follow his journey. Follow his story on Facebook - Jeremiah Gracen - TK2D Warrior
He was a healthy baby until he reached five months. From there his muscles began to weaken and because doctors were unaware of the disease, they thought it was just him being lazy and that he would grow out of it. He went from being able to lift his head to not being able to lift it at all. He spends most of his time in his mothers arms.
The rare disease has no proven treatment or cure. As a matter of fact, every website, article or anything you will find will talk about seizures, heart weakness and death as the disease is a rapidly progressive one.
Learn more on www.tk2d.com and tk2cures.com. The scary part is at any minute his health can change for the worse, but we see life.
Mom spent every minute from diagnosis trying to find answers and was able to contact Dr. Hirano in Columbia Univeristy NY. He is the only doctor that knows the disease and is treating the first case of a boy who made international news - Arturito Estopinan.
Along with Modis Therapeutics a therapy has been discovered to restore cellular function called MT1621. Because the disease is rare, so too is this medicine. We were blessed enough to use $10K raised towards his first few NY trips and medication. He is now in the clinical trial so anything else simply goes towards items he may need, monthly travel and anything related to his well being. Mom does not work as she cares for him 24/7 along with his brothers. We also request prayer. Jeremiah Gracen is the sweetest happiest baby and his eyes show the Glory of God. Help us save his life, help us make strides in awareness of rare diseases, help us help others, share and follow his journey. Follow his story on Facebook - Jeremiah Gracen - TK2D Warrior
Organiser
Anee Li
Organiser
Florence, SC
