Chase joined our Family on July 12, 2016. At 6 months old Chase was diagnosed with PCH.(Pontocerebellar Hypoplasia) PCH is a very rare progressive brain disease. It breaks my heart to say it but his time with us is limited. His cerebellum and pons are both severely underdeveloped. He has difficulty breathing, swallowing and his muscles are constantly moving which causes him a lot of pain. But Chase is a very strong little boy. Over the past 12 months he has come such a long way. With all the love and care Chase receives from his parents and his two older brothers, he is able to spend his good days snuggling, giggling and smiling like any little boy his age should.
Chase is very lucky to have his Mom, Amanda Kosko. Most deservingly so, she has been referred to as a Super Mom. Caring for a child with PCH is a major deal. It’s a 24/7 job that has no room for error. Around the clock Amanda is monitoring Chase’s wellness, making sure he is breathing ok. She is fully aware of what she must do at all times. She takes care of all his medications and nutrition which is done intravenously and through a feeding tube. Everything she had to learn to keep Chase healthy is truly impressive and we praise her for how brave she is. Because of her unconditional love, her endless drive and her pure selflessness we have been blessed with Chase’s beautiful smile, his precious shiny hazel eyes and his heartwarming laugh.
With a stay at home mom, Chase’s Dad, Joe Kosko is hard at work to provide for their family. He too is super in every way. After working endless hours, Joe still makes time to teach his oldest son Evan to snowboard and build things like the Ghostbuster Headquarters Bed for his second son Mason.(Ghostbusters is his favorite movie) You can really tell Joe is a special kind of Dad. He loves his boys more than anything, especially his baby Chase. Not a day goes by that Joe doesn’t bring joy to Chase’s life. Even on a bad day he can find a way to bring a loving smile to his sons face.
Even though there are so many good times, Amanda and Joe ultimately face the reality not knowing what the next day will bring. Over the past 18 months they have spent countless nights in Connecticut’s Children Medical Center. Joe, taking much time off of work is now struggling financially, while continuing to work less so he can be there for his boy.
On February 4th, Chase was admitted in to the PICU (Pediatric Intensive Care Unit) after waking up with a high fever and his stats were dropping. After some aggressive respiratory treatments he improved and graduated to the regular floor. Chase was showing interest in his favorite toys again and Joe felt confident Chase was going to be ok so he returned to work. While joe was away, and Amanda was spending every night in the hospital with Chase, he was admitted back into PICU... Joe has been absolutely heart broken that he wasn’t there for him. Chase has since been sedated and is using a breathing tube. The doctors have tried several times to remove the tube over the past week but the pneumonia, RSV and a sinus infection are not allowing him to breath on his own. The doctors are now doing everything they can. We are all praying Chase heals up so he can open his eyes again and be held by his mommy and daddy. We are praying Chase gets to go home and be where he belongs. Right now, Joe needs to be with his wife and son in these difficult times. We are asking for all the help we can get to provide them with a some peace of mind while they do everything they can to comfort their baby boy in the hospital in hopes of his recovery.
Thank you everyone for all the support. Joe and Amanda are so grateful for everyone who’s been reaching out. Keep those prayers coming!
- Alison Ainsworth
- Patricia Puglisi
- Gerri Prescott
- Natalie Perugini
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