Sadeel’s rare genetic disorder is tougher with poverty.

I would like to introduce you to Sadeel.

Sadeel is a brave and resilient young girl who faced many challenges in her life. She suffered from a rare genetic disorder called FoxP1 syndrome. Currently there are less than 400 people diagnosed world wide. This syndrome affected her speech, mental development, and motor skills.

Sadeel's life took a drastic turn when her family had to flee their hometown due to the ongoing war. They became refugees in neighboring Jordan, seeking safety and a better future. Sadeel's mother, unfortunately, abandoned them during this difficult time, leaving her father as the sole provider and support for Sadeel and her older brother.

Despite their hardships, Sadeel, her father, and brother found solace in their modest home. They cherished the love and support they gave each other, forming an unbreakable bond. Sadeel's father worked tirelessly to make ends meet, often taking on multiple jobs to provide for their basic needs. Unfortunately, as a refugee, he is denied the right to work and even ended up detained for a few days at one time when he was found to be working.

Sadeel's condition requires constant medical attention and therapies, which they are unable to afford in their current situation. Her father longed to give Sadeel the care she deserved, but the limited resources made it challenging. Nevertheless, he never lost hope and continued to search for ways to improve Sadeel's well-being.

As Sadeel grew older, she faced additional challenges. Despite hitting puberty, she was still not toilet trained, and her delays in speech and mental development persisted. Sadeel craved the companionship of friends who could understand her situation, but unfortunately, she often faced bullying, various forms of abuse.

As a parent of a FoxP1 child myself, I understand the challenges these kiddos face on a daily basis and how much care and therapy hours they need every week. Our FoxP1 kiddos need a person caring for them on a 24/7 basis. Let’s try to make it a bit easier for Sadeel and her family and give them what we can so they can survive life and look up to hopefully start therapy and improve this young girl’s life.

I Jason Charif living in CA, USA am organizing and collecting funds on behalf of Sadeel and family. I have met Shehab, Sadeel’s father on the FoxP1 Facebook support group for families and friends. Funds will be transferred to the father Shehab Ali via Western Union. Funds will be used for doctor visits, particularity specialists Sadeel has not seen yet. It will be used on various therapies, glasses, and other necessities for Sadeel. Thank you for your support.