About

Joel was diagnosed with Tuberous Sclerosis Complex (TSC) and Epilepsy (due to TSC) at 9-weeks-old.  TSC is a rare genetic disorder that causes benign tumors to grow on vital organs.  Joel's brain was approximately 80% tumors.  It was evident early that Joel was intellectually impaired.  He was globally developmentally delayed and until 15-months-old couldn't even roll or sit up.  He was a heartbreaking little lump as he lay seizing all day.  He had constant underlying seizures with at least 20-30 a day that we could see, even with up to three different seizure meds in him at the same time.  We didn't have much hope for him.  We were told he may never walk or see. 

At 15-months-old Joel had a large tumor (approximately a quarter of his brain) removed to try to stop the non-stop seizures that medicine had failed to stop.  The seizures were gone for about 2 years, then they slowly came back.  The part of the brain that was removed received the right side of his vision, so the surgery left him visually impaired, although he appeared mostly blind before the surgery and now sees much better.  Joel was diagnosed with PDD-NOS around 3-years-old, but was re-evaluated when he was 6 and was changed to a diagnosis of Moderately Severe Autism.  They also found the tumors in his eyes when he was 6.  Joel started having Grand Mal seizures at 8-years-old and was diagnosed with Renal Cysts and Angiomyolipomas soon after.  He still mostly doesn't talk (although he occasionally says a word) and he elopes if given the chance.  Joel has to have constant supervision, even at home, since he has no safety awareness and needs to be monitored for seizures.  This is extremely exhausting and difficult for the entire family.  Joel likes to climb and perch (a danger with seizures), and when he runs he is extremely fast (which is very scary in dangerous situations).

Despite all Joel has been through, he is one of the happiest and sweetest kids I know.  I am constantly told by those who work with him that Joel is the sweetest child they have met.  He almost always has a smile on his face, and he loves to pass out kisses and hugs.  When he was younger he loved to sing.  He could sing Jesus Loves Me word for word and knew the chorus to multiple hymns.  He was pitch perfect.  Sadly he has lost his singing, although he still loves listening to music.  Joel has a love for Jesus that although he can not express is evident through his ever cheerful spirit. 

Joel is our third child out of four.  He has two older brothers, Jonny & Jason, and a younger sister, Emma.  We have a 4-H rooster, dog, and very soon we'll have 13 hens.  It's a little bit like a crazy zoo around here sometimes, but I wouldn't have it any other way.