Dear Family and Friends,

I’m reaching out to ask for your support for my 14-year-old twin nephews, Jaxon and Jacen Ernst. Both boys are facing an incredibly tough battle — they need kidney transplants due to a genetic condition.

Jaxon is currently on the transplant list, waiting for a kidney, and doctors expect that Jacen will need to be added to the list very soon. Their mom, a single parent, has already had to take significant time off work to manage the countless medical appointments — which are three hours away — and she’ll need to do so again to care for them during and after their surgeries. I can’t imagine the emotional and financial strain of going through this with one child, let alone two, likely just months apart.

Your support could truly make a difference for this family during such a difficult time. Any donation, no matter the amount, would mean the world to them and help ease the burden of medical costs, travel expenses, and lost income.

Thank you so much for your kindness and generosity. Your support and prayers are deeply appreciated.

UPDATE 3/29/2025
The boys had their echos and ekgs updated for their transplant. Jacen's tests showed some Left ventricular hypertrophy, which is where the heart's left ventricle thickens, making it harder to pump blood efficiently. Jaxon is showing some signs as well. Now they both will see a cardiologist down at Riley's on April 4th to get some meds and get their hearts right before transplant. Jaxon had MRI's done up here at UChicago on his spine, pelvis and brain to see what is going on with his legs. Muscular dystrophy was ruled out with a blood test and the brain scan is all good. But, they did diagnose him with SCFE. This is where the head of the femur is slipping off at the growth plate, most likely a side effect of the growth hormone, but very common in boys their age. They want to perform a hip pinning, where they will pin the head to the bone. Doc said that if he was a normal boy with no kidney problems, he would be having this surgery immediately. Because of him needing transplant, we are passing all of this info down to Riley's and will be working with his team of doctors there for surgery, since most likely he will be needing dialysis before and after. We are going to Riley's on Tuesday, April 1st to meet with an orthopedic doctor and get him set up for surgery. His transplant team wants him getting his legs fixed before transplant. This may mean he will have to start dialysis before transplant while waiting to recover from his hip surgery. He is in pretty bad shape. Doc wants him in a wheelchair until surgery to prevent any further damage. She said a fall could pop that head off and cause real damage.

UPDATE 4/4/2025
Jaxon had his SCFE surgery first thing this morning AND at the same time Jacen had his cardiologist appointment to see what's going on with his/their hearts.

Let me tell ya, I think I got my steps in for the month running back and forth between IN and OUT patient areas of the hospital 😮‍💨

Either way...they put 1 screw in each of Jaxon's femurs to hold things in place and keep the head from slipping further. They say it shouldn't bother him and it'll remain there forever (unless there are issues). As he grows, the bones and growth plates will get stronger and his pain/limp should resolve over time.

Both boys are also dealing with Left Ventricular Hypertrophy. They have Jace hooked up to a heart monitor to check heart function for the next 48 hours (portable/at home). Doc is trying to figure out if this is related to their kidney disease or if it's a separate issue. They'll probably run more genetic testing, etc...just to make sure they cover everything. We'll do more tests on Jax after he recovers from this hip surgery.

Currently aiming to be released Monday after dialysis and then we can finally get home.