Help Ethan WIN

I am struggling today with what to write, but it is time to ask for help. Ethan has been through so much and has such a long road ahead of him, we want to make sure he has every possible chance to live the life he wants. 

Ethan is the oldest of five children, having three brothers and a sister. He is wonderful, imaginative, curious and brilliant, spending his free time often solving complex math problems, writing music, or playing games. He graduated high school from the Math and Science Academy at Dulles High School, and even made a perfect math score at the Texas Decathalon State Championships, after which his team went on to Nationals and did fantastic! He is set to graduate from UT Austin with a degree in Mathematics and is applying to graduate school to study number theory, with the goal of being a college professor.

Ethan's story: 

In 2019 at his 18 year old well child appointment he was found to have high blood pressure, his pediatrician put in a referral to a cardiologist who found an aortic dissection/aneurysm. After spending some time in the Texas Medical Center the plan was made to repair his Aorta during the summer of 2020.

In June 2020, the repair was successfully completed. Ethan's healing was amazing and he was able to return to school in August. 

September 2022, Ethan reported not feeling well so he went to the ER in Austin, where he was found to be in renal failure. After extensive testing, a kidney biopsy reveals Myeloproliferative Glomerulonephritis (MPGN) which means that the filters (glomeruli) in his kidneys are damaged, which his 14 year old brother also has. To complicate things even further he had a bone marrow biopsy at that time because he was Pancytopenic (low RBC, platelets, and WBC) which showed he had something called Monosomy 7, causing the cells in his bone marrow to have problems developing. He was started on dialysis 3 times a week, and kept a strong desire to remain in school at UT Austin.

In December 2022, he was life flighted from Austin to the Texas Medical Center with complications related to his blood pressure, and made the difficult decision to move back to Houston where he has support from his family.

In January, he was again hospitalized with what was found to be gangrenous cholecystitis (dead/necrotic gallbladder) and sepsis. Through a miracle he pulled through and is on the journey to healing.

At that time he received a referral to MD Anderson. His diagnosis of Myelodysplastic Sydrome (MDS) was confirmed, which means that while for now he is requiring transfusions in order for his blood counts to keep him functioning, potentially this could lead to Leukemia as time progresses. Ethan's father passed away in 2010 from MDS and he has had genetic testing done to follow up with this, however these results may take several months.

Now, after a second bone marrow biopsy, we have met with Ethan's team and reviewed the results which show that 90% of the cells in his bone marrow display this abnormality, while the rest are normal. Due to his need for frequent transfusions, this is considered an intermediate risk MDS and treatment is recommended.

After reviewing Ethan's history, the decision was made to proceed with a low dose IV chemotherapy agent 3 days in a row every four weeks. This has the potential to hopefully modify the cells in his bone marrow and hopefully they will behave like normal again.

However, the potential cure for MDS is a stem cell transplant and there are complications regarding that discussion, namely, his renal failure. It is likely that renal failure may prevent a stem cell transplant, and the MDS may prevent a kidney transplant. At this time more conversations between the experts are happening. One thing we need to keep in mind is that Ethan has youth on his side, and this has been done before. It is likely to be more successful if both the kidney and stem cells come from the same donor. However, his first goal is that his abdomen needs to heal and he needs get stronger!

The treatment will begin soon, depending on a conversation with Ethan's abdominal wound care specialist and his oncologist. The chemo will likely make him a poor candidate for surgery if a skin graft is in the plans in the near future.

Any donations towards Ethan's care would be utilized for things such as parking, gas, prescriptions, anything insurance doesn't cover.

We love and appreciate everyone who is able to help, and even if you can't donate please keep Ethan in yours thoughts and prayers. He is going to do great things one day, I believe he could change the world.