Lucas Zangara Bone Marrow Transplant Expenses

Hello! My name is Christina and I am writing on behalf of my grandson, Lucas.

Lucas was born on November 5th, 2020. His partnes, Nick & Becca Zangara were able to find joy in his birth even with the knowledge that he was a born very sick.

Shortly after birth he was diagnosed with a rare genetic disease called Diamon Blackfan Anemia. Only 1 in 7 million people are diagnosed with DBA.

DBA effects the bone marrow and its ability to make healthy red blood cells. DBA can effect different parts of the body and is responsible for Lucas being born with a limb abnormality on his right arm. This abornomality includes a hosrter arm and missing his thumb. In 2021, Lucas underwent surgery to move his index finger into the thumb position so he would have greater hand mobility and function for his lifetime.

There are three main treatments for DBA - blood transfusions, high dose steriods and a bone marrow transplant. Each treatment comes with risks. Blood transfusions can cause iron overlaod in major organs (the heart, liver, kidneys, etc) which can be deadly and require either oral or iv kelation therapy. High dose steriods cause waterretention, lack of sleep and stunt growth. A bone marrow transplant has many risks.

Since his birth, Lucas has undergone blood transfusion and steriod treatments to manage his DBA. He was transfusion dependent from bith until about the age of two. During these years, he would receive a blood donation every 6-8 weeks.

At age 2, he began high dose steroids. The steriods assisted in stimulating the bone marrow to produce red blood cells. The high dose steroid protocol begins with a high dose of steroids and then the dose is slowly backed off to see how low the dose can be. This treatment worked for a little over a year and during this time, Lucas was transfusion free.

When the steroids began to not work, they were slowly increased again. During this time (Lucas's 3rd year of life), he needed some transfusions although he could go longer between transfusions. During this year, Lucas also needed to start oral kelation therapy to combat the high levels of iron in his heart and liver. He calls this medicine his chocolate milk medicine (they mix it in chocolate milk to hide the taste) and he does not like it!

During 2024, due to the risks of the long term effects of both the transfusions and steriods, Becca and Nick began speaking with doctors at the University of Minnesota Children's Hospital about the pssibility of a bone marrow transplant. During these conversations, they learned Lucas potentially qualified for a medical trial involving a new type of drug for the chemo portion of the bone marrow transplant. This drug is easier on the body and has shown success in use during bone marrow transplants. On October 31, 2024, they were notified Lucas qualified for the trial and received the last available spot in the trial!

During November and early December, the preparations began with many conversations with doctors, initial work ups and the search for a donor as Lucas's sister was not a good match. (Siblings are the best possible matches from family members).

At this time, a great match has been located and agreed to donation and the process is set to begin in mid-January.

The bone marrow transplant will be conducted in Minneapolis at the U of M Children's Hospital. Lucas will be an inpatient for at least the first 6 weeks and will need to be within 30 minutes of the hospital until day 100 (100 days from date of transplant.)

Becca has taken a leave of absence from her job as a 1st grade teacher with the Sioux Falls School District so she is able to be with Lucas through the process.

Nick will stay in Sioux Falls. He will continue working and taking care of Lucas' sister, Liana.

Throughout this process, the Zangara family will be split - Becca and Lucas in Minneapolis - Nick and Liana in SIoux Falls. Nick and Liana will make the trip to Minneapolis as often as they are able to.

Any funds raises will go towards out of pocket medical expenses, supplementing Becca's missing income and travel expenses for Nick & Liana to visit as well as for future visits to the children's hospital after Lucas returns home.

If you are not able to financially donate, we would appreciate your prayers - we know that God holds Lucas and Lucas' family in the palm of His hand and has a great plan for Lucas life.