HELP SEND JAX TO CALIFORNIA FOR LIFESAVING TREATMENT

PLEASE donate and help SAVE THE LIFE of JAX!!

Jax Ramirez is a 9 year old boy from Zelienople, PA and the son of my dear friends - Missy and Pete Ramirez. I'm starting this Go Fund Me because Jax desperately needs a LIFESAVING treatment for his life-threatening autoimmune disease - IPEX. There is FINALLY a treatment option available for him in California and we need YOUR help to get him there!!! This diseases forces them to live in isolation and away from all germs which are fatal to him. After searching for a stem cell match for over 2 years and finding no match, time is running out! He now has the chance for a lifesaving treatment through a clinical trial in Stanford, California (San Francisco Bay area) starting in JUNE! But there are MANY challenges and LOTS of costs associated for them to live there for several months. Their family desperately needs help with funding to make this happen - and SAVE JAX'S LIFE!!

For the past 2.5 years, Missy has been scouring the earth and working tirelessly (in addition to her full-time job as a Pine-Richland school psychologist- and mother of 2 little boys who can barely leave the house) to set up drives and get media awareness to find Jax a stem cell match through her "Be The Match for Jax". Unfortunately, they have been unsuccessful in this process. Time is running out! Most children with IPEX don't even live to be 2 years old - but Jax and his parents are FIGHTERS, defying the odds and Will. Not. Give. Up. Missy is the definition of a mama warrior and starts every day putting on a brave face ready to do whatever it takes to conquer this nightmare!

Jax now has the opportunity to partake in a clinical trial at Stanford, CA that could save him! This trial - with the world's leading IPEX doctors - will last several months of "gene therapy" meaning the family will have to uproot, take a leave from work, safely transport Jax across the country and live in one of the highest cost of living areas for several months.

Please find it in your hearts to donate to this family who has been in this fight every single day. They go to bed and wake up each day in fear - but also with hope. Let's be their hope.

Here is the link detailing the treatment: https://www.stanfordchildrens.org/en/services/stem-cell-transplantation/conditions/ipex-syndrome.html

If you would like more details- I invite you to read Missy's latest update:

"For those of you who don't know, since diagnosis over 2 years ago, I have been in discussions with Dr. Rosa Bacchetta and Dr Torgerson, in California and Seattle, respectively. They are the IPEX experts, internationally.

It has been grueling, where there were many days and months I was so defeated because we were so close to being accepted and uprooting ourselves, to find out it just wasn't the right time. During that time, the study found that Jax produces proteins that fights a virus (which is good - we all do this) but he also produces an antibody that kills the proteins to kill the virus, creating a storm in his body. We finally have the answer to 'why' he gets so sick. They didn't want him traveling. It felt like every turn, an answer would turn into defeat. It felt as if the very things I hoped for (answers) made more obstacles for a miracle.

BUT, for those of you who know me well, I never take 'no' as the final answer. There is always a solution. ALWAYS. I tell Jax 'some things are hard, but we can do hard things', so I have to take my own advice. And, I did the hard things.

As of last night, Stanford Medical let us know Jax still does not have a match. This is an important aspect of the journey, because if we had a match, we would have to make a decision - take the 'known cure' (which likely will create more medical issues) OR take the unknown - Stanford. The answer was 'easy' last night, we do not have a match at this juncture, so we have been PRELIMINARILY accepted to the Stanford Medical study with the IPEX experts. If all goes to plan, we will be in Palo Alto June 17th, and Jax will be transplanted in July with his genetically modified cells (gene therapy, see link below).

In the midst of this, we had to figure out our journey to the West Coast. This was an impossible mission a year ago. The FDA is very persnickety about travel (we are under the FDA because this is a Phase 1 trial). We couldn't drive which for Jax is the safest way. We couldn't take a commercial flight, and there seemed to be no hope. THEN, my little tiny loving town of Zelienople came through and we have transportation to California!

NOW, we are faced with lodging. The Ronald McDonald House is transient, and just rooms. The four of us cannot safely stay, 3000 miles from home in a communal area. It is just not right for us, our purpose or journey. This is where you come in. We need a HIVE mind. Can you think of ANYONE you can contact that may have access to private lodging for us in the northern area of California? Think anything and everything! Someone always knows someone! We have to stay within 30 miles of Stanford Medical (Stanford, CA) per the FDA.

We need your help and have limited time!"