Help Finn Breathe

With a heavy heart we come together for our baby boy Finn. On June 28th Finn became very ill, Finn lost his ability to breath on his own and went blue in our arms. We rushed our 2 week old baby to the ER at Primary Children’s. Finn was placed on a ventilator and has had numerous tests done on to try and determine what has caused our son to fall ill.

Our son has yet to receive a full diagnosis, but has had several tests done by our wonderful team of doctors and nurses. We are trying to understand why are baby boy is unable to breathe on his own without the help of ventilators, high flow oxygen, or just flat out oxygen. Our team is trying to figure out why our son is not able to rid his tiny body of apnea, CO2, bicarbon. Finn is unable to eat on his own because we are afraid that he has been aspirating his bottles. He has a feeding tube placed to see if that helps him get better and breathe on his own.

Our precious boy has been a patient at Primary Children’s hospital in the ICU since the end of June. With hope, prayers, love and a lot of tears we hope to bring our baby boy home soon.

Our precious boy made his entrance into the world early June and was sent home just two days after birth; which as his mother I was shocked because Finn was a premature baby. Baby Finn has kept us on our toes, he tried to enter the world at 31 weeks, he kept attempting to escape the womb until the gestational age of 35 weeks. Finn was born in the OR next the NICU but never had to spend time there. Finn is the definition of a tiny fighter, he is a very tough little baby.

Our world was turned upside down on June 28th when myself and Finn’s big brother (who is two years old) watched our baby boy turn blue and let out a cry that I will never forget. Finn has spent a good chunk of his life in the ICU. Our boy continues to fight for his life and continues to fight… that being said we are watching our tiny son fight for his life.

We brought Finn home briefly as we originally believed Finn had a virus. Finn returned back to the hospital two days later and was placed back in the ICU. Finn went grey this time while we were waiting for admission into the ER. Long story short upon arrival back to Primary Children’s Hospital our son struggled yet again… when we arrived the nurse asked me “Is he breathing?” This experience has changed us forever, we want our son home, healthy this time.

Our world was turned upside down when we were told that our Finny would be undergo another test to determine whether or not he would need new life saving measures to save our fighters life. We were told that Finn may be chronically ill, fighting a genetic disease that would require a tracheotomy. The disease is called Congenital central hypoventilation syndrome (CCHS) it is a disorder that affects normal breathing. People with this disorder take shallow breaths (hypoventilate), especially during sleep, resulting in a shortage of oxygen and a buildup of carbon dioxide in the blood. Ordinarily, the part of the nervous system that controls involuntary body processes (autonomic nervous system) would react to such an imbalance by stimulating the individual to breathe more deeply or wake up. This nervous system reaction is impaired in people with CCHS. They must be supported with a machine to help them breathe (mechanical ventilation) or a device that stimulates a normal breathing pattern (diaphragm pacemaker). Some affected individuals need this support 24 hours a day, while others need it only at night... It has required numerous hospital visits, extensive medical treatments, and constant care.

We pray to that we will have the right answers and our team will know how to help Finny.

Our Finn has had a serious set backs, we will fight for our son, we will advocate for our boy, we will battle for our Finn who is too tiny to speak for himself. We ask that you pray to that we will bring our son home soon and we will have the answers to help Finn.

Our hope is that our baby son can be with his big brothers, and that Finn will live a normal, happy and healthy life; that he will be able to do the things that we take for granted, such as breathing, running, eating, playing, holding hands with his two year old brother in the back seat of our car.

We ask that our friends, family, and community help our young family bear the tremendous financial burden that our family is facing.

Despite the challenges, Finn remains incredibly strong and resilient. He continues to smile and bring joy to everyone around him, even in the face of such adversity Finn continues to fight and smile. As his parents, we are determined to do everything in our power to give Finn the best chance at a healthy and happy life. We want our precious Finn that we awaited for to have the same healthy life as his 2 year old brother, 7 year old brother, and 8 year old brother.

The medical expenses associated with CCHS are overwhelming. From hospital stays to specialized treatments, medications, and therapy sessions, the costs are mounting rapidly. Finn has already begun extensive testing; MRIs, CTs, Sleep and Swallow Studies, EEGs… the list goes on and on.

We are at the frontline to figuring out how to help tiny Finn. We are humbly asking for your support during this difficult time. Your generous donations will go directly towards covering Finn’s family expenses, as I am currently not working, most of Finn’s medical expenses have been covered by Medicaid, but things are very tight to say the least. We want to ensure Finn’s financial needs are met as I continue to search for work. We want our Finn to be able to have everything he needs and that he receives the best care possible.

Every contribution, no matter how small, will make a significant difference in Finn’s journey to recovery. If you are unable to donate, please consider sharing our family’s story with your friends and family to help spread the word.

We are endlessly grateful for your love, prayers, and support. Together, we can help Finn overcome this challenge and look forward to brighter days ahead and fight like our boy does every day. We can all benefit from knowing my son Finn Kershaw, our son is not only beautiful… but our guy is funny, gorgeous, and the strongest littlest buddy out there.

Thank you from the bottom of our heart for reading our story.

With love,

Frank and Angela.