When we received his application, we immediately knew he was
special because he shares the same birthday as one of our directors.
Jaxon will be two in February 2018 and is probably one of the cutest
little boys ever. Before Jaxon was diagnosed with Chiari, officially,
he was already presenting a lot of symptoms at his young age.
He struggles with communication barriers, which leads to frustration and
aggression. Jaxon’s mom, Crystal, also noticed that Jaxon would grab his head by his ears while screaming and hitting his head into the pillow.
Their local doctors dismissed these things, claiming it to be behavioral,
but mom knew something was not right.
Being a single mom of four, Crystal struggled to maintain her job
and income while trying hard to figure out what was happening to her son.
He was constantly sick with infections, fevers, and she often
had to leave work to pick him up. Jaxon finally was diagnosed with Chiari,
but not much else came along with the diagnosis. Within a few days,
Crystal’s neighbor posted about Chiari awareness on Facebook,
so she reached out to them and it turned out they had Chiari too!
The neighbor introduced Crystal to a local mom that had
three children with Chiari, who urged her to come to
NYC for Jaxon to be seen at Chiari CARE at Weill Cornell.
Without hesitation, she made an appointment for Jaxon
and was set to see Dr. Jeffrey Greenfield in exactly four weeks.
This was little time to plan, so she decided she would drive down the
night before, stay outside of the city, and drive back home after the appointment. Then came more bad news, the car’s check engine light came on and needed costly repairs. This cut into what little budget they had to travel. A friend of theirs offered them a friend’s apartment which would have been great, but they had a cat, which Jaxon is allergic to –
yet another obstacle.
Luckily, Crystal’s aunt was able to buy their plane tickets and book a hotel but staying in NYC is very costly.
That’s when she found DURAble Brains Foundation in an online support group.
We were able to offer Crystal some assistance in staying in
and getting around New York City, which is no easy or inexpensive task!
Jaxon & DBF
Here’s what Jaxon’s mom, Crystal, had to say:
Happy New Year to you and everyone at DURAble Brains. We were very fortunate to have learned about your organization. I cannot even begin to thank you enough for your assistance and continuous support. I wanted to thank you for the gift bag and assistance with our trip to NYC. I am very proud for Jaxon to have been the first recipient from DURAble Brains. Being a recipient enabled me to be a little at ease with the (numerous) challenges I encountered with getting Jaxon seen at Weill-Cornell Chiari Care. I am extremely grateful that I was able to get Jaxon there. Everyone was very nice and explained things in detail. Overall my experience was fabulous and I feel confident with the care received.
I am sorry I did not get better pictures but one thing I wasn't prepared for my first time in the city, let alone with a toddler! Thank you for all the tips for free things to do while we were there. We took advantage of most of them! I wanted a nice picture of Jaxon holding the gift bag for you but he definitely ripped it and ate the stress ribbon as I took a phone call from one of his doctors lol. I really appreciate you and DURAble Brains more than I can express.
After our first visit to Weill Cornell Chiari CARES, It was recommended that Jaxon have some repeat scans and follow up. Due to our local choices, I found it best to have his scans done in NYC and meet with the doctor after. We scheduled the scans and then the nervousness set in, Jaxon had previously not came out of sedation well and had been a mess the day of sedation.
Due to being out of work still, I reached out to and applied to DURABLE Brains foundation for assistance. The ladies there have been a great support, resource and assistance. After our appointment, I was fortunate enough to meet with Michelle and ask questions of her experiences (even though i know every case is different) because my son has a condition I do not know what he may be facing. She was a tremendous help talking with her.
I cant thank DURAble Brains Foundation for all you have done!
Your kind donations are going to go to more families like Jaxon and Crystal’s. We are so grateful for all of the support we have received to make stories like this happen! To help more families like Jaxon's please visit our DONATE page.