Family Loses Newborn To Rare Muscular Disease - Opposing Views

Family Loses Newborn To Rare Muscular Disease


A rare muscular condition took the life of a newborn baby in Britain.

Baby Ezra was only 8 weeks old when he died from an incurable, rare genetic muscular condition called spinal muscular atrophy, type 1, reports the Mirror.

Parents Lee Morgan and Lucy Froley took Ezra to the doctor when he had a chest infection, but were unaware how serious his condition was.

“After two minutes, the doctor gave him oxygen and an ambulance was called,” said Froley.

The infant was transported to the University Hospital of Wales in Cardiff, where he was put on life support.

He was then referred to the children's hospice in Wales, Ty Hafan, after being diagnosed with SMA type 1.

Although Ezra died after having been taken off life support for 24 hours, Froley was grateful for the hospice's efforts in helping her family spend the short time they spent with their son.

"In those 24 hours, Ty Hafan made so many memories happen for us — hand and footprints of Ezra and his 2-year-old big sister, and fingerprints on little butterflies," Froley said. “Before Ezra passed away on March 6 we had the most fabulous and magical family day anyone in our circumstances could dream of."

The family will take part in a fashion show to raise money for Ty Hafan for its support of families.

“I want to make sure everyone is aware of what Ty Hafan does instead of finding out like me and my family,” Froley said.

The National Institute of Neurological Disorders and Stroke groups the SMA types 1, 2 and 3 together as hereditary diseases that cause the weakening and wasting of the voluntary muscles in the arms and legs of babies and children. While there is no cure for SMA, research is being done to treat such diseases.

Sources: Mirror, National Institute of Neurological Disorders and Stroke  / Photo credit: South Wales Echo


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