Special Delivery

October is Dysautonomia Awareness month! I myself suffer from a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is an umbrella term used to describe neurological disorders that cause malfunction of the Autonomic Nervous System which regulates heart rate, blood pressure, digestion, temperature control and more. Dysautonomia is more common than you would…

My name is Sydney and I am 15 years old from Central New Jersey. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in January 2020. At the time, I wasn’t quite sure what that meant, but no one else around me felt the same way I did. I was passing out frequently and had…

“Maverick was diagnosed with Legg Calvé Perthes Disease in May 2019, a few days after his 7th birthday. Because of the loss of blood flow to his hip, the head of his femur has started to deteriorate. He has to be completely non-weight bearing to avoid total bone collapse. He needs crutches and a wheelchair…

When reading a card from our foundation wishing Logan joy, Logan exclaimed, “JOY, of course this brings me joy!!!” This kid is such a bundle of joy and love.

Vacations, parties, school, concerts… Just to name a few of the many engagements you may have had cancelled the past few months. Many have the hope that things will go back to normal soon, but this is what everyday looks like for a chronically ill child. Never take for granted the simple blessings in life!

Brooke Miller, Age 9, suffers from Cerebral Palsy, Epilepsy, and Aicardi Syndrome. We granted her family some ways they could spend time together. The best part of meeting Brooke is when she kept reaching out to grab my hand. I could feel her love. And have you ever seen a cuter smile?! “I am still…