$355.00

October 4, 2024 Everleigh Jade was born, soon after birth, she had her newborn assessment where they found that she had a clef palette along with a severe lip, tie and tongue tie. This caused numerous feeding difficulties knowing this, I knew that there was a possibility of her being transferred to Golisano children's hospital. Later that night Everleigh was immediately transferred as she had an aspiration episode, causing her to turn blue. The following morning I requested an early discharge so I can see my baby. Well arriving little did I know that this is going to be the first day of a long 2 1/2 month day at the Nicu. After a few weeks of Everleigh thriving and being a rockstar, she started to decline. She had several more episodes This lead into several other tests, one being a swallow study in which she failed miserably if that wasn't enough, they then found that her oxygen dropped while she's on her back or being held. Everything seems so unclear I'm so finally the day came where we had a diagnosis Everleigh Was diagnosed with Pierre Robin Sequence. This is a rare condition where the jaw is underdeveloped and the tongue is set back further than it should be causing her tongue to block her airway and of course cleft palette is also a symptom. Soon after we received a date for her big girl surgery, a surgery called a mandibular distraction. After a month of healing and undergoing more tests and acing every single one of them, Everleigh was declared safe to go home. Pierre Robin Sequence has many obstacles, And we know we will get through them with the help of the amazing team we have at Golisano children's hospital. They surely go out of their way to make sure we know that we are not alone and we could not be more grateful. This is our story, and there are several others. We ask for your help to bring awareness to Pierre Robin Sequence, along with giving back to this wonderful hospital no donation is too big or too small or you can register and join our team Almighty Everleigh And take a stroll for strong kids with us.

The annual Stroll for Strong Kids Walk and 5K Run will be held on June 1, 2024 where Golisano Children's Hospital supporters will enjoy a family-friendly atmosphere full of activities.