We are asking for your help for our beloved daughter, Amirah, who is still so young but has already been facing a difficult medical journey.

Our daughter was born in Saudi Arabia and was developing normally at first. As she grew, we noticed that she was having difficulties with her development. She was not rolling over or crawling as expected and needed support to sit. Later, we began noticing episodes where her head would suddenly drop and her eyes would roll upward. These episodes became a major concern for our family.

She underwent several medical investigations, including CT scans, an MRI under sedation, and EEG testing. Her CT and MRI did not show major structural abnormalities, but her EEG was abnormal. The doctors diagnosed her episodes as seizures, including infantile spasms/atonic-type episodes. At one point, her EEG showed modified hypsarrhythmia.

We tried different treatments, including Vigabatrin, Prednisolone, Keppra, and Clobazam. Despite treatment, she continued to experience episodes, and managing her condition has been very difficult for our family.

After further genetic investigation, we finally received an answer for why our daughter has been experiencing these problems. She was diagnosed with SLC35A2-CDG (Congenital Disorder of Glycosylation, type IIm), a rare genetic disorder that affects how cells process and use certain sugars that are essential for normal body function and development.

Because this is a rare condition, our daughter needs specialized medical care, regular follow-up, neurological monitoring, genetic evaluation, medications, therapies, nutritional support, and potentially specialized treatments recommended by her doctors. We are also trying to access specialists and treatment centers with experience in SLC35A2-CDG.

As parents, we are doing everything we can for our little girl. We want to give her every possible opportunity to develop, learn, and have the best quality of life she can.

The financial burden has become very difficult for our family. The costs include medical consultations, diagnostic and genetic testing, medications, therapy, specialized nutritional needs, travel to appropriate medical centers, and other ongoing expenses related to her condition.

We are therefore reaching out to family, friends, and kind-hearted people around the world for support.

Any amount, no matter how small, can make a difference. Your donation will help us continue her medical care and give us the ability to seek specialized treatment and expert advice for her rare condition.

If you are unable to donate, sharing our fundraiser with others would mean just as much to us.

Please pray for our daughter and for her continued strength and progress. She is our precious little girl, and we will continue fighting for her every step of the way.

Thank you from the bottom of our hearts for reading our story, supporting our daughter, and helping us give her the care she needs.