Make A Child Smile

Jaxon's Story
written by mom Heather

Jax is our baby, he was born on June 1st, 2001. It was a long delivery with some complications, so we were very relieved to see such a perfect baby when he was born.

Jax seemed good during his hospital stay but when we got him home we started noticing right away that something wasn't right. (We had one older child to compare him to.) Jax screamed all the time... everyone assured us that he was just 'colicky', that boys were just tougher babies... even our doctor at that time kind of 'blew off' all of Jax's screaming.

Jax was a little slow on reaching developmental milestones but not slow enough for anyone to take notice. He also had a really large head, but again, not enough for anyone to take notice... we were always told that his head and issues were 'borderline' a problem, but not a problem yet.

At age 2, Jax wasn't crying as much but he wasn't talking much either... the doctors said again that he was 'borderline' and not to worry yet.

In July of 2003, Jax fell and hit his head on our driveway... one of his eyes crossed to the middle and we knew that something wasn't right. We went to the ER and had a CT scan, they told us that he was fine and sent us home.

The next morning our primary care doctor called and said that when they reviewed the MRI they noticed a mass in Jax's brain... they thought he had a tumor.

We spent that whole day at the doctor, running labs and tests, getting ready for an MRI the next day.

The MRI showed that Jaxon did not have a tumor, he did however have a Chiari I Malformation (malformation in the brain). We met with a neurosurgeon and Jax had surgery a week later to make more space for his brain by removing some skull and shaving the vertebrae.

Jax didn't recover well and he kept leaking spinal fluid from the wound... after 2 months another MRI showed that Jaxon had hydrocephalus.
In October of 2003, Jax had a VP shunt put in to keep the pressure in his brain normal.

Jax was still not doing well and actually stopped walking much due to leg pain... an MRI in December of 2003 showed that Jax had a tethered spinal cord, in January he had surgery to fix that.

Jax still wasn't getting better, at this point we decided to start seeing another surgeon. He had surgery in March of 2004, to revise his shunt, it had been clogged.

From there Jax still didn't do well... he has had a total of 15 surgeries in the past 2½ years, most of those have been neurosurgeries.

Jax was diagnosed with Asperger's disorder in the summer of 2005 so we are finally learning to understand him a little more... he is a very unique kid. He is very smart but lacks a lot of social skills. He loves to play on his computer and to swing.

During this whole process Jax also started to develop syrinxs (cysts in the spinal cord), he has had surgeries to try to get rid of them but it isn't going too well... these syrinxs continue to cause further damage to Jax's spinal cord. If we cannot get them under control he will just continue to lose function of his body.

In 2006 we spent a LOT more time looking for answers... Jax had several more surgeries on his spinal cord and his shunt. In November we did a pressure monitoring study to see if we could find out why he was having so many headaches...it did not get us any clear answers.

Jaxon is very aware that 'life isn't fair'... he is very angry at this point, trying to understand why it has to be this way. But we know that in time he will move past this anger...and we know that in time we WILL find answers and a cure.

Jax is such a serious 'little man'... he takes a long time to warm up to people but once he does he loves you with his whole heart... he will grab your face in his hands and get really close, stare into your eyes... and tell you that he 'loves you to Heaven and back'.