On March 5th 2019, JT was diagnosed with Triosephosphate Isomerase Deficiency (TPI). TPI is a genetic multisystem disorder that is life-threatening, complications such as respiratory and heart failure can occur during childhood. In addition to TPI, JT has Hemolytic Anemia which is premature destruction of red blood cells in your body and is why he will need blood transfusions. As the deadly disease progresses, other symptoms include neurological damage that can lead to paralysis, intellectual disability, tremors and dystonia.
￼ JT is currently being treated at Stanford Children's Hospital. Since there are less than 60 cases ever reported, there is very little information found in medical literature. TPI Deficiency is so rare that JT is 1 of 5 people in the world living with this disease. At this time, his team of Doctors do not know what treatments can help or cure him. We were devastated when they said his estimated lifespan is probably 2 to 5 years. ￼
From the bottom of our hearts, we are asking for donations that will help fund the medical research about this disease and assist with JT's medical expenses. Any support you can offer for this campaign is greatly appreciated! ￼
Since day one, JT has had a loving and laid back attitude with a smile that will melt your heart! His favorite foods are apples and carrots. He has mastered rolling over, throwing things on the ground, and scooting across the floor.
￼ ￼ ￼ If you'd like to follow JT's progress, his website is www.savejt.com. From our family to yours, thank you so very much for the love and support!