Jeremiah's Bucket List

At the beginning of April my friend’s Helina and Scott found out that their 11 year old Jeremiah who’s Autistic has now also been diagnosed with Spinal Epidural Lipomatosis, which is very rare in kids.

Essentially this means he has a fat that is building up around his spinal cord (SEL) is a rare, benign disorder that occurs against a background of abnormal hormone levels or steroids in the body. It causes spinal cord compression, in the lumbar or thoracic region, with accompanying neurological signs and symptoms. This finally helps to answer why his back pain is so bad and muscle spasms, weakness, still needing his wheelchair and incontinence.

Currently, Scott and Helina are facing some hard moments as parents.  Jeremiah needs a risky surgery.  This surgery has a high risk of Jeremiah losing his life.  The hope is that Jeremiah would make it however he would likely need more surgeries for the rest of his life, living in constant pain with screws, pins and plates in his spine.  The surgery is planned for August.

However if they don’t do the surgery Jeremiah will continue to decline and lost the use of his bladder, legs and possibly his arms or worse.

As a parent you want to hold your child’s hand and tell them everything will be fine. You want to reassure them that the best is yet to come. You want to wipe their tears and fill them with hope.

So it’s time to fill Jeremiah with hope and joy.  This incredible 11 year old has created a bucket list. He has one major item we need to help him accomplish.  Jeremiah wants to go to New York City and see the Big Apple!   We need to get him there as soon as we can.

Scott, Helina, Jeremiah and Ethan (his brother) are people that always look on the bright side of life.  Their family moto is ‘when life gives you lemons, you make lemonade’.  This family has had their fair share of lemons, they need a good dose of some lemonade.