Help raise money for our little Hayes

My name is Paige Siwinski and together with my family we are hoping to raise money to support my nephew Hayes, his parents, and his sisters. In honor of Epilepsy Awareness Month this November, we’re sharing his story.

In December 2022, at 6 months old Hayes experienced his first seizure, his first visit by paramedics, and his first ambulance ride to the ER. Initially, doctors believed the seizure resulted from a high fever, however, this first seizure was quickly followed by a second seizure less than 24 hours later…a second visit by paramedics, second ambulance ride to the ER, and first visit to Lurie Children’s Hospital. The seizures continued without explanation – many more visits by paramedics, trips to the ER, anti-seizure medications, hospital stays, so many tests, more anti-seizure medications, rescue meds, and endless unanswered questions.

In August 2023, at 14 months old, genetic testing revealed that Hayes was born with a rare, progressive and severe form of epilepsy, known as Dravet Syndrome. Dravet syndrome is caused by a variant in the SCN1A gene. For Hayes, this genetic mutation is considered de novo, meaning it happened at random and was not passed down from mom and dad. This syndrome causes medication-resistant epilepsy, delays and impairments in cognition, speech, mobility, sensory processing and social skills.

We’ve discovered that in addition to the multiple daily anti-seizure medications, avoiding triggers is important in decreasing seizure activity. Unfortunately, the triggers are many. Hayes must avoid becoming too warm or too cold, too tired, and even too excited. A simple cold that most toddlers can power through can trigger a seizure. We are learning to be especially careful in extreme weather, with any changes in stimulation levels such as lights or noise, and to be watchful for any signs of illness, even a mild cold. Illness is very challenging as the potential for fevers and decreased immune system increase his seizure risk. And even with the avoidance of these triggers, Hayes continues to experience prolonged seizures.

Fortunately, we received an early diagnosis and doctors have been able to create a treatment plan that limits (but does not eliminate) his seizures. We know that this condition is unpredictable, and that becoming seizure-free is unlikely. Hayes requires 24/7 monitoring and care as his seizures happen suddenly and without warning and most often require intervention with one or more medications.

With so many unexpected medical bills, time off work to care for Hayes, medical equipment (e.g., seizure-detecting camera, oxygen monitor, safety bed, etc.), many prescription medications, and unpredictable future expenses, we’re hoping to relieve some of the financial stress on my sister and brother-in-law in caring for Hayes and his two big sisters, Harper and Hallie.

Hayes is a sweet toddler who has become an epilepsy warrior, battling his diagnosis through giggles and smiles each and every day. He will require a lifetime of support and love. Thank you so much for helping this amazing family.