Hope for HIE Birthday Fundraising

Empowering the global HIE community to celebrate & give back!

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Organized by Hope for HIE

$2,120

43 Supporters

Silas

Fundraiser since Jan 2025

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$610

13 supporters

122% of $500 goal

Silas' Story

Silas Dale was born January 19th 2024 via emergency c-section and was recessitated after 28 minutes with no heartbeat. The first few days were terrifying, he was placed in a hypothermic state in order to slow the progression of his injury, he was on a ventilator, and had severely supressed brain activity. Silas' future was very uncertain, survival under these circumstances is considered exceptionally rare, and we didn't know what to expect, we were told to assume the worst. He astounded everyone with his resilience when he quickly began breathing on his own, from there he took on an upward climb, making new strides in his recovery nearly every day. He was diagnosed with severe Hypoxic Ischemic Encephalopathy, a brain injury due to oxygen deprivation, with damage to every area of his brain. I got to researching immediately, and found Hope For HIE, which has been a beacon of light in an otherwise very dark journey. Silas was able to leave the NICU after 5 weeks and some change. Coming home he was lifting his head, pushing up, looking towards lights and windows, and started reacting to lights and music shortly after. He was soothed by Tracy Chapman, enjoyed scooting himself across the playmat, and cuddling mom and dad. He enjoyed feeling different textures and even began batting at braille and grabbing toys. Around 3 months old, Silas began having seizures, a complication from HIE, he experienced a regression in skills, and trouble tolerating his tube feeds. Mom and dad found solice in Hope for HIE support groups, a new diagnosis of Infantile Epileptic Spasms was upon us, not uncommon amongst those effected by HIE. Silas' fight continues. Amongst many new diagnoses, Quadriplegic Spastic Cerebral Palsy, Microcephaly, Cordical Vision Impairment, and Chronic Lung Disease, to name a few, he continued to rebuild new skills, like taking a pacifier, regaining some head control, turning towards sounds and light, and even pressing a button to shuffle through songs. Around 7 months old we started to notice another regression beginning, followed by more diagnoses at 9 months old. Lennox-Gastaut Syndrome and Dysautonomia. Lennox-Gastaut Syndromes' primary known cause is Hypoxic Ischemic Encephalopathy, it is a severe form of epileptic encephalopathy, meaning each seizure further contributes to loss of cerebral mass and progressive damage to the brain. Dysautonomia, furthermore, comes from that new damage to the brain, specifically to the brain stem, and causes dysregulation of the autonomic nervous system, which controls the heart rate respiratory rate, and temperature regulation. Silas started Palliative/Hospice care in November, and has continued to defy odds by retaining his fighting spirit. He is an utter miracle, and he is not alone in this journey. There are over 20k families worldwide effected by HIE, many cases, like Silas, are due to medical malpractice. Hope For HIE supports families like ours in this journey, from mild injuries to the most severe outcomes, with support, research, and advocacy. For Silas' first birthday, we ask for gifts to go to Hope For HIE, so that they may continue to support the cause, and create better outcomes for children like Silas.

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Hope for HIE

A 501(c)(3) Public Charity

EIN 46-4038344

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