Every child brought into this world is a blessing and one of a kind; Mirza reminds us of that every day. Mirza is a unique young woman for myriad reasons, only one of which is the fact that she was born with an extremely rare congenital disorder known as Hallermann-Streiff Syndrome and is one of fewer than 200 people living with this condition worldwide.
She was born premature and arrived with a long list of complications. Doctors operated almost immediately on her severe cataracts and sent her to exam after exam because they weren´t able to determine her condition. Over the next few years her health problems persisted and it became increasingly apparent that physically she was not developing like other children. She experienced severe headaches and chest pains, her vision loss persisted, her hair was not growing and neither was she. The doctors believed she had another rare condition called Progeria, in which the symptoms resemble an accelerated aging process. It wasn´t until two years ago when Mirza joined us at Centro Scheel and underwent further examination that she was finally diagnosed with Hallermann-Streiff.
When she was a baby, the doctors told Mirza´s parents they didn´t think she would live to celebrate her 12th birthday. Mirza is now 21 years old, 4 feet 2 inches tall, and full of energy, talent, and ambition. Growing up has not been easy; she was born into a very poor family in a dangerous neighborhood, her mother abandoned her when she was 12, and due to the complications of her condition and her appearance, leading a so-called normal life has been a challenge. Children at her previous schools didn´t understand why she was different and often ridiculed her; people in the community and on the street still say hurtful things and make fun of her appearance. Her vision is continually deteriorating and for this reason her case was brought to the administrators at Centro Scheel two years ago. She was enrolled in the school and is now in the 8thgrade.
In Centro Scheel, Mirza says she finally feels comfortable and safe. It took time to get past her defenses, but she eventually felt comfortable enough to answer the questions from her curious classmates and share with them the details of her condition. She´s not very interested in mathematics and she finds English class really hard, but she loves her art and drawing courses. She makes beautifully hand-crafted figurines and sells them in her spare time in order to help the family out financially as much as she can.
Mirza has goals and says she will never stop dreaming. One day, she would like to meet her all-time favorite artist, Justin Bieber. She also wants to carry on with her studies to one day be a psychologist. Mirza´s biggest dream is to start her own project to educate people about Hallermann-Streiff Syndrome and other conditions like it. She wants to start in Centro Scheel, take her message into the community and throughout Guatemala, and maybe even someday around the world. Mirza believes that with more education and a greater understanding that one day we will respect one another and all of the qualities that make each and every one of us unique.
Centro Scheel is able to continue its work because of the donations we receive from around the world. With your help, Mirza and more than 150 other students at Centro Scheel are in school and pursuing their dreams. Every donation you make opens the door to a brighter future for all of these children and for Guatemala.
Silvia greets us at her front door with a smile and invites us to sit on the bed in her small but well-kept one-bedroom house where she lives with her husband and two little boys. We gently ask her to tell us about the birth of her youngest son, Jose Emanuel. Lowering her gaze, she smiles at the beautiful baby sitting in her lap. At the same time, a sadness flickers across her face as she begins to recount the all too recent battle to save the life of Jose Emanuel.
“Just a skeleton,” Sylvia thought, when she saw her baby boy for the first time on July 26, 2011. Jose Emanuel was born premature and with Down’s Syndrome and spent the first 18 days of his life in the hospital. He was released and sent home, but it was then that the complications really began. Sylvia and her husband didn’t understand anything about Down’s Syndrome, how to care for a baby with the condition, or how it was going to affect their lives and that of their newborn. Jose Emanuel wouldn’t eat, he never stopped crying, and his mother didn’t know what to do. His health quickly deteriorated and the family returned to the hospital and admitted Jose Emanuel into intensive care. The doctor took one look at her baby and told Sylvia that Jose Emanuel wouldn’t recover. His fever was so high that at one point he actually stopped breathing and the entire room thought he had passed away. They placed the baby in an ice bath and miraculously, Jose Emanuel began to breathe again. Another eight days in the hospital and the doctors sent the family home once again – no more prepared or educated than the first time to care for their fragile baby boy. Read More→