I am Jase Schlosser's Nana.
Jase was born August 1st, 2014, which was one of the happiest days of my long life. Little did I know just 48 hours later - all that joy would be taken and replaced with fear, hopelessness, anger, and dread? Before Jase I knew nothing about Cystic Fibrosis (CF). Jase was born with Meconium Ileus, this occurs when the meconium is too thick and sticky to be passed, causing a blockage. About 18% or 1 in 5 CF Patients are born with this condition. Jase required surgery at just 2 days old and had drains placed to help irrigate his bowls. Right after surgery; the surgeon looked at my son and girlfriend in the eyes and said, "99.9% of babies with this blockage have Cystic Fibrosis" and walked away. The parents proceed to tell us in the waiting room . This is when the Confusion, Fear, and Anger set in.
I went to the Cystic Fibrosis Foundation (CFF) here in San Diego to see what this disease was and our options. Me, a blubbering fool walked in and met the staff. They explained some of the facts of the disease and what steps are being made everyday through research. By the time I left I realized that there was HOPE!
In his short 5 1/2 years of life, this brave, happy little boy has had 3 major surgeries, 20 admissions adding up to over 300 days in the hospital, has been on a strict medical routine daily which includes : various medications, countless antibiotics, probiotics, vitamins, enzymes at each meal so that he can absorb the nutrients from his food, the Vest which provides Chest Percussion Therapy (CPT) to help loosen the mucus in his lungs, Nebulizer treatments, and various Inhalers just to stay healthy. On top of that we watch for germs Jase now wears a mask in public since he has a super hard time fighting the normal everyday germs we take for granted.
We started kindergarten this year which has its own struggles. He is growing so fast.
This past year your donation has help bring about Trikafta a drug that helps about 90% of those with CF live a more manageable life. Jase is in that last 10%. We will not stop fighting.
In 2015 we joined the Cystic Fibrosis Foundation and started our Great Strides Team: JASE's PRIDE and raised $2,750
In 2016 we raised $5,515
in 2017 we raised $8,792
In 2018 we raised $7,702
In 2019 we raised $8,670
Please help us raise our Goal of $7,000.00 this year. We thank all who have given in the past and welcome you to join us to raise the much needed money for research, resources and support for all the CF patients and their families. With your help we can make CF stand for CURE FOUND.
We are Stronger Together because Nobody Fights Alone.
Marian Schlosser (Nana)