Give Hope to Harper Maeve's Brave Journey
$5,475 raised of $125K
Help Harper Maeve Fight Lennox-Gastaut Syndrome
Hi, my name is Maricar, mom of our brave little girl, Harper Maeve.
Harper was born in February 2023, full term and healthy. She was the sweetest, quietest baby who could even put herself to sleep. We never imagined anything could be wrong. Harper was delivered as a healthy baby until 3 months old. There were small signs — moments when she'd stop breathing for a few seconds or couldn’t hold her head up — but we thought she was just developing at her own pace.
Then in June 2023, our world changed. During a normal feeding, milk suddenly came out of her nose, followed by strange “jackknifing” movements. My husband suspected infantile spasms, but I couldn't believe it — until her doctor confirmed it in the ER. Harper was just 3 months old.
From that day on, it’s been a whirlwind of tests, hospital stays, and medications. Her diagnosis evolved from Infantile Spasms to Electrical Status Epilepticus of Sleep, and finally to Lennox-Gastaut Syndrome (LGS) caused by a rare brain malformation called Polymicrogyria — affecting only 0.1–0.28 per 100,000 people each year.
Harper’s seizures are drug-resistant. She has 100's of seizures per day, which prohibit proper brain development and often undo the progress she works so hard for during physical, occupational, and speech therapies.
Our next hope is Stem Cell Therapy in Panama, along with intensive physical and occupational therapy in New Jersey. The United States does not approve or cover stem cell therapy at this time. However, there have been promising improvements in patients with brain abnormalities such as autism and epilepsy — both in children and adults — who undergo this treatment abroad. This gives us hope that Harper may gain a better quality of life.
This treatment could change her future, but it comes with significant costs — travel, medical care, and ongoing therapies.
Please help us fight this battle with Harper. Every donation, share, or prayer means the world to us. Even if you can't give financially, following and sharing Harper's story helps more than you know.
Thank you for standing with our little warrior, Harper Maeve.
You can find us and follow Harper's journey here:
— Maricar and Family
Organizer
