Gene Therapy for Jaxon

Jaxon has a rare disease that can be cured and the only thing stopping us is money. You can help.

Some of you know that Jaxon has special needs. Very few understand exactly what that means and how he is impacted. At the age of 4 months, I knew that something wasn’t right. People told me that I was just comparing him and that all babies develop differently. I knew better and I kept pushing for answers.

He started physical therapy, speech therapy and occupational therapy at 6 months old. Glenn had to leave his job( I had the better insurance) in order to get Jaxon to all of his therapies each week. He didn’t babble, he didn’t hold toys and he couldn’t sit up on his own.  They suspected he was having up to 20 seizures a day and we were in and out of the hospital for tests.

In my search for answers we went through three rounds of genetic testing, each one diving a little deeper into rare disease. Shortly after his first birthday, we got an answer I never wanted to hear. Jaxon had a genetic mutation that causes a rare neurological disease. The disease is so rare it affects only about a hundred people in the world and there was no cure. 

We started searching everywhere for any information, and the more we uncovered the more bleak it became. 99% of the kids with the disease will develop epilepsy by the age of three. He turns three in January. Many of the children also find the gene drives autism and a form of apraxia that renders them unable to have any words at all. 

As these things became true for us, I piled on more therapies with the hope that we could defy the odds. While Jaxon has done just that, he is still impacted in a very profound way. He is delayed in every area, has spacial awareness disorder which has caused him to break his leg two different times, he doesn’t sleep more than a few hours at a time, and he has absolutely no ability to form words. 

His reality is the most soul crushing devastation a mother could imagine. Not being able to find your child the treatment he needs renders you helpless. While I am not hopeless, I am incredibly worried about his future. He has shown regression over the past few months which means he is losing the few skills he has that he worked so hard to gain. He has also become violent because of the extreme frustration he has when he can’t communicate. He understands everything going on but is locked inside of his tiny helpless body. We are frequently covered in scratches and bruises from his episodes. 

If you know me, you know I don’t typically complain. I have had cancer and more than my share of health concerns. Yet, I have never asked for help. I have always powered through. Unfortunately, this time I can’t just power through and I need help. We need help. Jaxon needs help.

An amazing mother about 20 miles south of us has a son Jaxon’s age that is affected as severely as Jaxon with the disease. She left her career to work full time on a cure for our kids. After meeting with over 209 scientists we have found someone to begin working on a gene replacement therapy that will cure our children. It will give them a shot at experiencing life just as you and I do. No threat of seizures. No inability to communicate. No risk of injury to self or others with the other physical and mental limitations. They have begun the process but it is very expensive. We need to raise a total of 4 million dollars. The good news is we are a quarter of the way there. The bad news is that we are running out of time and we need to ensure these scientists stay funded.

Here are a couple ways you can help right now. Donate. It doesn’t matter if it is $5 or $500. Your contribution will literally help remove a rare disease from existence and save children’s lives. Please consider skipping your next Starbucks trip and dropping that into our fundraiser. 

Second. Invite people to like this group and share our fundraiser. If you can contribute, thank you so much. If you can’t, please share because someone you know may be able to. 

Will you help Jaxon get gene replacement therapy? 

***We have never personally asked for money from anyone and never will. I am asking for your donation to go directly to the nonprofit funding the research. 100% of your donation goes to the creation of the therapy. The nonprofit pays no salaries and has no overhead.