Levi's Support Care

Levi was born with Diamond Blackfan anemia. His family had never heard of this rare genetic disorder that primarily affects the bone marrow. They have learned so much over the past two years. This is his story. When Levi was born, he was and still is perfect. By the end of his first day on earth, doctors discovered that his red blood cell count was extremely low, so he was given a blood transfusion. After a few months of testing, he was diagnosed with this rare genetic disorder. He and his family have endured months of blood transfusions, infections, high fevers, and hospital stays. They were in touch early on with multiple hospitals to see if there was a cure. They found out that Levi could have a bone marrow transplant, but the doctors wanted to wait until he was at least one year old. If successful, this procedure would save his life. Levi was tested and a bone marrow match was found. The family will always be grateful to the young man that donated these life-saving cells to Levi. In August of 2019, Levi began all the testing to prepare him for the procedure at Duke Hospital in Durham, NC. His parents were given the news that he would receive the bone marrow cells on November 3, which is a very significant date since his grandmother Linda passed away on November 5, 2017. The family knows that Linda is watching over her grandson. 

The family has been at Duke since August. They are staying at the Ronald McDonald House and both parents, Jesse and Jessica, have been steadfast by Levi’s side. Levi has an older sister named Leah who is four years old. She has been so brave during this time and has been lucky to have the love and support of both of her families. Leah's father Justin and stepmother Brittany took over responsibility of Leah so she could be in daycare and have a normal routine until her mother returns to Smithfield. 

Levi has been tested to determine if he is making the donor’s red blood cells. He is making red and white blood cells and platelets. The family had begun making the transition back to Smithfield. Levi and his family packed up and headed back home last week. Unfortunately, he is back in the hospital at CHKD. He entered the hospital on Friday Feb. 14th due to a fever. He has been throwing up and had diarrhea. He has been diagnosed with c diff (a bacterial infection in his intestines), rhinovirus (common cold), and pneumonia in the right upper lobe of his lung. They are waiting on some more viral tests to come back. His immune system is suppressed right now so he is very vulnerable to everything.  He will be transported back to Duke Hospital tomorrow Feb. 19th. It is the family's hope that they will be reunited soon and on a normal routine. 

The family has not asked for any help, but I know it has been an emotional and financial challenge for this young family. Jesse, who works at the shipyard, took leave to stay home the first year with Levi, and Jessica, an RN, stopped working in August of this year. They have both been by his side since August of this year. 

If you would like to make a donation to Levi and his family it would be gratefully appreciated and accepted. The family could use the financial support for their stay at the Ronald McDonald house, and for gas and food for frequent upcoming trips to Durham for  appointments.


Thank you so much for all the love, thoughts, and especially prayers during this difficult yet life-saving time.