Support Hayes’ Hope for Healing

We have created this fundraiser in support of Hayes and his mom and dad, Alexa and Cody Fisher. As most of you know, Hayes has been admitted into the PICU for the past year at Texas Children’s Hospital. We created this fundraiser to help support Hayes’ continued medical bills, expenses/needs of being in the hospital long term, future equipment and home modification needs, and many more costs that are to come related to their family's relocation to Houston for Hayes’ care. Due to the severity of Hayes’ condition and need for high-level neurological care, Alexa and Cody will be uprooting their lives and moving to Houston, TX in order to make sure Hayes continues to get the care he needs with his team. Alexa and Cody have always been more private about all of the hardships related to Hayes’ condition. They choose to share the most important side of Hayes being his happy, smiling, and beautiful spirit. Those of us who have witnessed the hardships they are facing know the financial and emotional burden they carry. Their main focus is advocating for and loving on Hayes and we hope this fundraiser will take some of the stress away so that they can continue to focus on Hayes and his needs. We appreciate more than anything your support and consideration in donating. Most of all, your thoughts and prayers for Hayes during these tough times are most appreciated.

A little background on Hayes’ story from his parents:

Being born at 26 weeks, Hayes’ fight started from the moment he was born. Hayes spent 4 months in the NICU where he faced many challenges that come with being born so premature, but eventually became strong enough to go home where he was thriving more every day. Around Hayes’ first birthday, he began showing signs of developmental regression, worsening seizures, and movement disorders. Subsequently, he was admitted into the PICU after going into respiratory failure and an overall decline following rhinovirus. During his 5-month PICU stay in 2023, Hayes required a tracheostomy and became partially vent-dependent. Hayes continued to have neurological decline after his tracheostomy and required a transfer to a higher-level hospital, Texas Children’s Hospital, in Houston. Hayes had many subsequent admissions and testing to try to determine what was causing his decline while allowing him to be home.

In May of 2024 Hayes’ symptoms became so severe he was admitted into the PICU where he has spent a year and counting. Hayes’ progression has become so severe that he has been heavily sedated and at times on a paralytic or pentobarbital coma due to severe neurostorming, severe dysautonomia resulting in multiple cardiac arrests, seizures, severe movement disorders, severe irritability, and respiratory decline resulting in respiratory failure. Hayes has endured multiple procedures, surgeries, and traumatic interventions. Hayes had also lost a lot of his functional mobility and now has a myopathy resulting in decreased movement of his lower extremities. Hayes will be wheelchair and equipment dependent for the foreseeable future.

Hayes is currently still considered undiagnosed after extensive testing due to the rarity of his disease or the fact that Hayes may be the first with this specific diagnosis. The team at Texas Children’s, as well as other consulting hospitals nationwide, have been able to piece parts of his condition together to determine Hayes most likely has an ultra-rare genetic/mitochondrial condition that is causing a severe neuro-inflammatory/immune process that is attacking his brain, brainstem, and now spine. Based on imaging and testing of his CSF where they found his inflammatory markers were extremely high, we started intense treatment for the inflammation in his brain. Hayes became so severe that we are doing weekly infusions of Tocilizumab and high-dose methylprednisolone (steroids). We have seen miraculous changes with these treatments, but Hayes still has a long road ahead of him and there is still so much unknown in his condition. When Hayes does get to the point of being able to leave the PICU, he will need to continue these infusions which will result in weekly and monthly infusions. Hayes will also require intensive therapies, continued intense neurological care, frequent admissions and close monitoring due to the severity of his disease and symptoms. Hayes is an extremely happy and loving boy who loves to be outside and explore with his family. He loves to play with his toys, ride his trike and four-wheeler, take trips with his family, and be active. Our hope is that soon he will be home doing all of the fun things that he loves to do.