Collin Michael Sensenig was born 12/02/2023, just shy of 3 weeks when being admitted to the hospital.

Wednesday December 20th, mom noticed Collin turning blue multiple times for 30 second periods. He was then transported to Bellin Hospital, and admitted to the pediatric unit. They ran many tests and monitored him closely but had no answers. Christmas Eve, Collin and his parents were transferred to St. Vincent PICU. They did the full work up, blood work, overnight EEG, hooked up to a carbon dioxide sensor, oxygen and just regular monitoring. The sensor showed that Collin had high levels of carbon dioxide, and the blood work confirmed.

Christmas Day the doctor broke the news to Ali and Dan that he is most definitely sure Collin has CCHS, but we just need to wait for blood work to come back to be 100% sure.

December 26th Collin was placed on RAMcan that distributes breaths to him. Doctors had placed a transfer call to Madison Children’s Hospital, but were denied transfer at the time due to no beds available.

Fast forward two days, December 28, they got the call that Collin will be airlifted to Children’s Hospital where he will be admitted to the NICU to continue his care, find answers and hopefully soon start treatment.

Collin and his parents are fighting for his life trying to find answers and waiting to start treatment.

Congenital central hypoventilation syndrome (CCHS), also known as “Ondine's curse,” is a rare neurological disorder characterized by inadequate breathing during sleep and in more severely affected individuals, during waking periods as well. Unfortunately, Collin has spells awake and sleeping. There are only about 1,500 cases WORLDWIDE. CCHS has no cure. Some medical professionals believe that CCHS could be the cause of SIDS, if CCHS is not diagnosed early enough.

Funds donated will be used for the family's medical and travel expenses.