Reid Needs You

 Reid was born healthy on May 2, 2009.  For the first 18 months of his life, he progressed and grew normally.  The only thing we noticed about him that we couldn't explain were some small white patches of skin in various places on his body.  But as you can see, he is very fair, so they didn't seem to be a problem.  What we didn't know is that those patches are diagnostic of a genetic condition Reid has that had not been diagnosed yet. 

At around 18 months, we noticed some behavior we hadn't seen before.  He would smack his lips and make a face almost like he was tasting something bad.  His doctor thought he might have gastric reflux.  But the episodes became more noticeable and he would sometimes stagger a bit or stare off into space for a few seconds.  It became apparent eventually that he was having seizures.  We thought it might be just Absence Syndrome--minor seizures with no known cause which children tend to outgrow by puberty.  However, as they increased in length, the doctor ordered an MRI.

That was last November.  The radiologist called Reid's pediatrician and by the time we were in the car, she had called my daughter.  He has Tuberous Sclerosis, she said.  I'm an RN but I had no recollection of ever hearing of this condition.  Essentially, there are non-malignant growths called tubers which can occur in the brain, heart, kidney, bladder and eyes.  In Reid's case, he has diffuse tubers in various parts of his brain.  His eyes are fine, as are his kidneys, but he does have two small ones in his heart, which are benign and will cause him no trouble.  The ones in his brain, though, are causing a lot.  He continues to have seizures in spite of being on three different medications.  His neurologist hopes to be able to stop the seizures altogether, but it is difficult with this condition.  We pray that she can find a way, for he has stopped progressing as far as speech is concerned.  He is smart, and understands everything, but his inability to communicate frustrates and irritates him, as do the seizures themselves.  This is an incurable disease.  If we can stop the seizures, he can catch up, but right now his brain is so busy with the seizure activity he has no time to learn.  For each one we see, his neurologist tells us, he has hundreds of micro-second long ones. 

Since his diagnosis, the medical bills have totalled over $10,000. Insurance pays almost nothing.  Reid's dad works in his father's business and the family's income will not begin to cover the ongoing expenses Reid will always have.  That is the reason for my starting this page.  I know how generous people are when they see a need, and I hope that generosity will help relieve some of the financial burdens of Reid's illness. Mind you, the ONLY burden is financial; we feel blessed to have this sweet boy in our lives. He is such a bright little guy, sunny and happy and trying so hard to talk and learn.  Thank you to everyone who might be kind enough to help.  We will be eternally grateful for any donations we receive. 


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Jan Pfahl 
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