For Zelie family, costly treatment could bring fresh hope
Jax Ramirez isn’t so very different from other 10-year-olds.
He wants to play soccer and hang out with friends. He wants to enjoy being 10.
It shouldn’t be that big of an ask. But for Jax — and a small number of other children in the world who also carry the rare, life-threatening autoimmune disease known as IPEX — it’s nearly impossible. IPEX is a condition that causes severe vulnerability to infections. His family has had to largely limit his contact with the outside world and most people.
Since his diagnosis at age 4, Jax’s family has searched for a matching bone marrow donor who could offer a life-saving transplant. In the meantime, he’s been enrolled in a clinical trial at Stanford University in California that is working toward gene therapy options.
Jax has had some promising results. However, the second phase of the trial requires $2 million to buy stem cell technology and begin the trial’s application to the FDA.
The Ramirez family has long had the support of the Zelienople community. Now, the Rotary Club of Zelienople has planned a fundraiser to support the IPEX Foundation, a nonprofit founded by Jax’s mother, Missy Ramirez.
The Rotary club will hold a Winter Open Air Market on Jan. 27, along the borough’s Main Street. All proceeds will go directly toward the IPEX Foundation.
The market is just the most recent fundraiser the Rotarians have planned to benefit Jax and his family. The club believes it will be able to hit the target of $2 million, said Rotarian Rich Gigliotti.
Anyone who would like to contribute can search IPEX Foundation on Facebook to find more information and a QR code that will lead to a Venmo account set up to take donations.
The Ramirez family continues to search for a bone marrow donor. For now, Jax’s medical team believes the clinical trial is the way to go for his condition because it is less likely to introduce new health problems.
It’s nothing new to see Butler County communities step up to support one of our own, but it is inspiring to see the Ramirez family get the backup it needs in this way.
Everyone can get behind helping a child enjoy and survive his childhood.
More information about the foundation can be found at https://ipex.foundation.
— KL
