Help Kaia Fight Epilepsy
Dear friends and supporters,
Meet Kaia, our brave 17-month-old daughter diagnosed with refractory epilepsy —the first known case in Lebanon. This rare condition has led to developmental delays and severe, refractory seizures. Kaia had her first seizure at just three months old, resulting in her first hospital admission. Since then, she has been on a challenging medical journey.
Kaia relies on different medications, a feeding tube, and various types of therapies. She continues to have weekly or biweekly hospital visits and has experienced prolonged seizures lasting 40 and 20 minutes, respectively. These status seizures necessitate the use of rescue medication to prevent brain damage or death.
Unfortunately, due to the situation in Lebanon, we face numerous challenges in obtaining these medications, including the rescue medication. This has been an incredibly stressful journey for our family.
Recently, Kaia was admitted to the PICU twice for pneumonia. She is now on an ND-tube due to weakness in eating and failure to thrive. Kaia is non-verbal, has hypotonia, and cannot sit or walk. There is no adequate support or inclusion for her needs at the country level.
Despite these immense challenges, Kaia continues to fight with incredible strength and courage. We are reaching out for your support to help us cover her mounting medical expenses, including ongoing hospital visits, treatments, and specialized care. All her medications must be bought from abroad, and future medications will heavily burden our family financially.
Kaia's required medications, therapies, and equipment include(Currently and within the upcoming months):
- Keppra 100mg/ml is no longer available in Lebanon.
- Clobazam is not available in Lebanon.
- Depakine.
- Stiripentol is not available in Lebanon, with a monthly cost of 175 euros.
- Finfloramine, which will require Kaia to travel abroad to try the medication, as it is highly controlled (around 10,000USD administered in Lebanon)
- Rivotril and Valium as rescue medications.
- Physiotherapy, psychomotor, occupational therapy, and feeding therapy on a monthly basis.
- Monthly feeding machine rentals and feeding bags costs.ETC
These are the main monthly expenses needed to ensure Kaia has access to the necessary medication and care. Along with long hospital stays, we also urgently use machines such as a suction machine, pulse oximeter, and oxygen. In addition, our house needs modifications to accommodate Kaia’s disabilities, as well as specialized equipment for her rare case, which doesn't exist in Lebanon.
Part of this campaign aims to highlight Kaia's case alongside the nearly 20 to 40 reported cases worldwide. By doing so, we hope to raise awareness among research institutions, physicians, and caregivers about our existence. We encourage other caregivers to come forward and advocate for a treatment and, ultimately, a cure.
Your generosity will make a significant difference in Kaia's life and help us provide her with the best possible care.
Thank you for your kindness and support.
Follow Kaia's journey on Instagram:https://www.instagram.com/kaia_foundation?igsh=MWxxNTQ3aWJkd2Z3
With gratitude,
$5,663 raised Of $300,000
