Love for Leo

After months of neurology exams and genetic testing, my nephew Leo Robert (almost ten months) was hospitalized at Lurie’s Children’s Hospital and diagnosed with Infantile Spasms, a rare but serious epileptic disorder in infants.  MRI results have shown damage to the cerebral cortex, resulting in developmental delays.  At this time he is unable to crawl, sit up, grab things with his hands for too long, and just grew his first tooth.  In lieu of this upsetting diagnosis, Leo was also found to be aspirating on his formula/puréed foods, and a nasogastric tube was placed for feedings.



Leo’s treatment includes ACTH: a hormone injection, as well as steroids and an anticonvulsant to prevent further seizure activity.  However, one vial of this constituted medication costs $40,000.  Leo needs at least three.  Insurance has approved treatment, but it’s simply not enough.  My sister-in-law Kaycee has another son, and my brother Jeremiah has another daughter.

At this time, Leo is home, continuing his treatment as well as his tube feedings.  He is the strongest boy with the best of spirits.

Though we have a diagnosis for the seizures, unfortunately this road does not end here.  Leo’s team of neurologists are continuing to run more blood work and exams to find the underlying cause of the Infantile Spasms.  At this time, it isn’t very promising.

I am asking for any and all help you can provide to my brother and sister-in-law’s family.  All donations will be put toward left over medical bills, equipment that insurance does not cover, physical/occupational therapies, nutrition, groceries, diapers/wipes, clothes, etc.  Not only will this money help Leo and his parents, but his brother and sister as well - as they also deserve as much normalcy as possible.  We Simon’s are tough, but we need your help.

With a loving and grateful heart,

Emily