3 03 2011

(Guest post by Paula and Oscar Abalahin, Jaxon’s parents)

This is our beautiful son, Jaxon.  We adopted this sweet, smart, kind, and very active boy in 2001 when he was a toddler. For several years, we lived a normal, happy life.

Then one day, in February 2006, after a great day in kindergarten, Jax had some difficulty talking and his head was nodding, quickly dropping forward every three to five seconds.  His pediatrician thought Jax was having seizures, and we were referred to a pediatric neurologist. 

The next four months were spent in and out of hospitals, numerous tests were done, and many drugs were tried as his condition worsened to the point that the seizures prevented him from walking and he was no longer able to speak or even hold his head up. 

The doctors didn’t know what was causing these seizures and the best diagnosis they had was Idiopathic (no known cause) Epilepsy with intractable seizures.

We weren’t satisfied with that diagnosis, and searched the Internet trying to match his symptoms with a disease or disorder, but found nothing different than what our doctors had already found. 

We looked back at Jaxon’s medical history to see if anything he’d had could cause seizures.  Jaxon contracted measles at seven months of age, and we found that there was a rare condition closely matching his symptoms that was caused by the measles virus.

After the doctors reviewed his medical history from the Philippines, they diagnosed Subacute Sclerosing Panencephalitis (SSPE), a chronic persistent infection of the central nervous system caused by the measles virus, specifically an altered form of the measles virus.  

SSPE is almost always fatal within one to three years of onset, and has only a five percent chance of remission, and that slight chance depended on an early diagnosis and very specific treatment.

Because SSPE is rare, our neurologist needed a consult and found someone in Southern California who had treated a number of SSPE patients in the 1990s.

Over the next two years, our lives were consumed with hospital visits and exams and treatments.  Every day was a struggle, but he never gave up.  Jax always had a sparkle in his eyes, an incredible smile, and an infectious laugh that made you believe all was good.  But, in the end, he was hit hard with infections.  Despite his drive, his beautiful smile was slowly disappearing.  His body was worn down, although he never stopped fighting.

Jaxon would never want anyone else to suffer.  His fight to beat SSPE is our driving force.  We will continue raising awareness and looking for the cure, the cure we wanted for Jax. 

We are so proud of our son, our Super Hero, our Cracker Jax.



2 responses

18 05 2011
Sheila Delicano

While reading Jax’s story, I can’t help but cry not only because of Jax but because I see my son in him. My son also has SSPE and he’s totally imobile now.

He’s turning 10 this June 28 and it’s really really hard to see him struggle everyday. I don’t want to see him suffer but we’re not ready to give him up yet.

My son is also brave as Jax and I didnt see any single moment that he complained about his feelings.

It’s just sad, very sad and worst of it is we can’t find the cure inspite of exhausting all the means.

I hope at this point in time, you could help us find a better cure for this kind of disease should you have continued research.

I will keep your courage an inspiration.


18 05 2011

Thank you for sharing news about your son. How hard this must be for you and your family. SSPE is a terror and we are with you in hoping for a cure.

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