Local couples cope with children’s terminal illness

fdlreporter.com | September 1, 2012

Two Fond du Lac children – 1-year-old Mateo Medina, son of Amy and Adan Medina and 3-year-old Lucy Zahn, daughter of Barb and Noah Zahn  are unable to adequately breathe, eat or flex their muscles on their own due to a genetic muscular disease known as Spinal Muscular Atrophy.

Lucy Zahn and Mateo Medina can’t walk or talk, lift their heads, arms and legs, and cannot sit up. They express themselves through eye movement.

The children lay flat and are hooked to feeding and breathing tubes, as well as a machine that helps them cough because they lack muscles to do it on their own. Their parents manually suction the mucus from their little bodies.

Lucy and Mateo have Type 1 SMA, the most severe form of the disease. Most infants born with Type 1 SMA or who are diagnosed within the first six months of life are predicted to have a life span of just two years, according to the website www.fsma.org.

Lucy has already surpassed that prediction. She had her third birthday on July 9. It was an event she celebrated with Mateo, who celebrated his first birthday the next day.

“We need to spread awareness about this disease and the fact it is the No. 1 genetic killer of children under 2 years of age and that there is no treatment or cure,” said Amy Medina, a full-time social worker for Fond du Lac County who hires nurses to care for her son while she works and her husband sleeps in preparation for his night job.

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