Rhett Chance's Medical Fund

Rhett Koufax Chance was born on Saturday, November 3rd at 1:02pm, 8lbs, and 20 inches long. Proud parents Quinn and Chris brought him home on Monday to an excited big brother and sister. They showered him with kisses and hugs and started settling in as a family of 6.  On Wednesday, Quinn took Rhett into his first well visit and expressed concerns about some jitters, lethargy, and difficulty nursing. He was examined and the doctor recommended Quinn take him to the ER. They checked him into the PICU and the barrage of testing began, thinking it was a virus. But everything was coming back clear... On Thursday evening, Quinn and Chris received the results from the newborn screening that there was an abnormality, and a likely diagnosis of a rare disorder. More tests were run, and on Tuesday, November 13th, the diagnosis was confirmed.

Rhett has a rare genetic metabolic disorder called non-ketotic hyperglycinema (NKH). It is caused by a defect in the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body's tissues and fluids. The glycine buildup causes low muscle tone, lethargy, difficulty breathing and eating, and seizures, all of which Rhett is exhibiting. There is a wide range of severity of the disorder, and we are waiting for test results to see where Rhett is on the spectrum. Since he has had symptoms since shortly after birth, we fear that he may be on the more severe end. He is on anti-seizure meds, and has begun medications to remove the excess glycine in his body, which we hope will make him more alert and be able to come off the ventilator. But each case is different and we will not know for a few days if the medications will be helpful. His doctors are consulting with experts at UIC, who have experience with NKH, and have been providing wonderful care for him.

Here's the heartbreaking part- there is no cure and it is fatal. There is no sugarcoating it... Rhett is considered stable, but critical. Since each case is so vastly different, we do not know how much time we will have with this sweet and handsome baby. It could be a month, 6 months, a year. We don't know how long Rhett will be in the PICU and if he will be able to come home. So many unknowns... But Quinn and Chris are doing everything in their power to ensure that Rhett is comfortable and are savoring all the baby cuddles. Quinn's parents are staying with them to care for Larkin and Scarlett so that one of them can be at the hospital at all times. Quinn stays with Rhett every night so that he is not alone, and they both travel back and forth to the hospital several times a day.

We are incredibly grateful that the hospital allowed Jackson, Chris's 15 year old son, to visit Rhett in the PICU last weekend. You have to be 18 to be allowed in the PICU, and they made an exception, fearing that Jackson may never have the chance to meet his new baby brother. It was an extremely joyful moment for them amongst all the sadness.  

Rhett is at Advocate Lutheran General Hospital in Park Ridge, IL. If you are in the Chicago area and would like to show your support to them in person, I know they appreciate the visitors. They are so very humbled by all the support they have received thus far from family, friends and co-workers.

This has been devastating news to our families and friends, and a rough week as we all come to grips with the diagnosis. I wanted to set up this page as a way to provide updates to those who love and care about Quinn, Chris and their children, but I also know that so many people want a way to help. The reality is, this will be a heavy financial strain for their family... Since Rhett's condition and lifespan are so variable, we do not know the full extent of the care he will require and what will be covered by insurance. Quinn and Chris are a one income household on a teacher's salary, and both work in the summer to make ends meet. In January, their insurance deductible and out of pocket maximums will start over, leaving a mountain of medical bills in a very short period of time. No parent should have to endure this type of financial stress when you are worrying about your baby's health and how much time you will have with him.

If you would like help take that weight off of their shoulders, please consider donating. Every little bit helps, and I thank you from the bottom of my heart for any amount you are able to give. 

We appreciate all the positive vibes and prayers for Rhett. I promise to provide updates as Rhett's condition progresses.

Micah Ebert (Quinn's sister and proud Auntie of Rhett)