Newborn Taken To Doctors With Chest Infection Dies From Rare Condition Just Two Weeks Later

An eight-week-old baby has died from a rare condition two weeks after his parents took him to the doctors with what they believed to be a chest infection.

Baby Ezra suffered from a rare genetic muscular condition called SMA Type 1 which has no cure. It affects the nerves that control muscle movement.

Ezra's parents Lee Morgan and Lucy Froley are now determined to raise funds for the charity who looked after their son in those final two weeks.

Froley told Wales Online: "Ezra fell ill with a chest infection which we didn’t think was much to worry about until I took him to the doctors.

"After two minutes, the doctor gave him oxygen and an ambulance was called."

Froley's son was put on a life-support machine at the University Hospital of Wales in Cardiff.

After his diagnosis, he was referred to the hospice for children in Wales - Ty Hafan.

Froley said she had not heard of Ty Hafan before, but was able to witness the brilliant work they did for children and their families at incredibly hard times.

Ezra survived 24 hours after being taken off the ventilator at Ty Hafan. Froley said during the 24 hours, the charity helped to make so many precious memories for them.

She added: "[We did] hand and foot prints of Ezra and his two-year-old big sister, and finger prints on little butterflies. They supported us with everything, from making us tea to talking to us and making memories happen."

Froley is now taking part in a fashion show in aid of Ty Hafan with other mums supported by the charity. For more information on Ty Hafan or the charity event, visit the website.

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