We feared our baby would die

IN recovery: little Lily Limb is recovering at Manchester Children’s Hospital after being diagnosed with the ultra-rare and life-threatening condition Vein of Galen Malformation (VGM)

PARENTS who thought they might lose their baby daughter from a rare condition have launched an appeal to provide her with specialist equipment.

Tiny Lily Limb was taken to the Royal Oldham Hospital aged seven weeks following a seizure at her home in Derker. Tests showed Lily was suffering from a bleed on her brain and had a “Vein of Galen Malformation”, an abnormal connection between arteries supplying the brain.

The condition affects only one in five million babies and means blood flows faster and at a higher pressure than usual, causing strain on the heart and the brain’s major vein. Without surgery, organs, including the heart, lungs and liver can start to fail.

Parents Sarah and John Limb were told treatment was available at only two hospitals, Great Ormond Street in London and the Royal in Glasgow.

Sarah (38) said: “Our world was turned upside down in minutes. She was a happy, healthy baby up until that day — then everything changed.”

The family travelled to Scotland by ambulance but within hours of their arrival, Lily started to have almost constant seizures - in fact 70 of them, which left brain damage. She also suffered sight damage.

The baby was placed in the critical care unit and eventually needed a respirator to breathe. The discovery of a blood clot in Lily’s brain added further complications.

Sarah, who is also mum to Poppy (5) and Daisy (3), added: “We were told the blood clot made the operation even more complicated. It was awful, we were so worried.”

But the operation was a success. After several days of critical care, Lily returned to Manchester Children’s Hospital and continued to recover.

Sarah said: “We don’t yet know how the damage will affect her in later life. She is on anti-epileptic drugs to control the seizures and she is awaiting another operation once she has recovered.

Sarah and John are hoping to raise £4,000, enough for two mobile sensory units, one for the house and one for an Oldham play centre, which will help Lily and other children with special needs.

To make a donation, visit www.gofundme.com/cg6u64ug.