Layan Alburaiky

Life often takes us to unexpected destinations, but in the end, it forces us to discover the patience and strength we never knew we had.

When pain becomes a drive, and hardship turns into a message, the experience itself becomes a reason to make an impact and inspire others.

This is how the mother of the rare child Layan Al-Buraiki described her journey with her daughter’s condition, a path full of challenges that ultimately led her to become a source of hope and support for others.

When Building a Family Was Just a Small Dream

“Ever since I was a little girl, I dreamed of becoming a mother and having a small family. Praise be to God, I got married and began building that family. I faced some painful setbacks, I lost my first pregnancy in the ninth month, followed by multiple miscarriages. But by the grace of God, I was eventually blessed with three children. The youngest was my little girl, Layan, our joy when she arrived was beyond words. She was a beautiful, innocent baby.”

A Mother’s Intuition

“We brought her home after the doctors assured us she was in good health. But a mother’s heart sees what doctors cannot. I began to notice some differences. I would compare her development with her siblings at every stage and observed delays in both growth and movement.

In her first two months, she wasn’t tracking objects or seeing clearly. I felt something was wrong. To ease the doubt weighing on my heart, I took her to an eye specialist, and that’s when the first shock came

My baby, not yet two months old, was diagnosed with cataracts in both eyes and needed urgent surgery. Thank God, the surgery was performed when she was three months old. But the doubt continued to grow inside me. At nine months, she still couldn’t sit, she could only roll onto her sides. She also had frequent asthma attacks and chest infections. I visited several doctors, but they all told me that children develop at different rates, and that what I was feeling was just anxiety, that my daughter was perfectly healthy. But my heart kept telling me otherwise. Eventually, one doctor referred us to a specialized hospital in Riyadh, and we began the first genetic test.”

From Shock to Knowledge

“It took about a year and a half and three genetic tests to finally discover the cause of my daughter’s condition. When we received the phone call, I thought it was the lifeline I had been waiting for, or so I believed. We entered the doctor’s office, and she began murmuring terms I couldn’t understand: genes, carrier, recessive, affected…

It was all incomprehensible, and I didn’t know what condition my daughter had. She handed me a piece of paper with the disease name written by hand and told me: “Children with this condition don’t live long… don’t get too attached to her.” In that moment, it felt like the lifeline had snapped. I fell into a deep depression, but I managed to climb out of it when I decided to search for the disease myself.

I took the note and searched the term: Rhizomelic Chondrodysplasia Punctata To my surprise, I found no information in Arabic. So I worked on improving my English and began searching international websites and social media platforms. I found many articles, support groups, and families sharing their stories. I was able to connect with many of them and gather a wealth of information. With my brother’s help, I translated the first medical article about my daughter’s disease into Arabic and published it on the Waratha blog.

I then began searching for families in the Arab world with children affected by the same condition. I gathered them into a support group to exchange knowledge, experiences, and emotional support. I was able to contact the doctor who discovered the gene responsible for my daughter’s syndrome Dr. Nancy Braverman, and I participated virtually in the annual Rhizo Conference.

The more I learned about my daughter’s condition, the more I became certain that God is capable of all things. All I could do was give her the best care and rehabilitation possible, and leave the rest to Him. He is the Most Merciful and the Most Loving. My daughter’s syndrome is one of many types of Rhizomelic Chondrodysplasia Punctata, a rare condition. Thankfully, Layan has a milder form of the syndrome.

Her symptoms include:

• Cataracts in both eyes
• Frequent chest issues
• Epileptic seizures
• Developmental and cognitive delay”

From Pain to Purpose

“My daughter has been, and still is my greatest inspiration. Because of her, I changed. I became stronger. I began raising awareness about rare diseases with all the strength I had, helping other parents so they wouldn’t have to suffer the way I did. I was able to organize numerous awareness events in collaboration with various organizations. I connected with many mothers and families, offering guidance, helping them process the shock, and supporting them to stand on their feet again and fight for their children.

I may be just a mother of a child with a rare disease, but I see myself as a mother of a little girl who defied the impossible, and who stood, with her beautiful smile, to face life with strength and determination. Despite all the challenges and obstacles her condition brings, she still looks at me with that innocent smile, as if saying: “God is with us, Mama.”

My daughter Layan is my inspiration in life.”