HER first day at school came somewhat late for little Ellie Mitchell.
Last week former Rawmarsh girl Ellie celebrated her sixth birthday AND the schoolday she thought might never come...
The bright, brave kid who has a rare form of epilepsy suffers up to 100 fits a day and is on a cocktail of medication.
But after eight months living on a ward to undergo surgery, treatments and round-the-clock care at Sheffield Children’s Hospital, she is finally home with her family and attempting a ‘normal’ life.
Gran Sandra Allott, 52, of West Avenue, Rawmarsh, was tearful as she described how Ellie wandered her house, even feeling the walls in her delight at being back.
Ellie now lives with parents Claire and Andrew Mitchell at Thrybergh, and was welcomed to her new primary school last week for up to two hours a day.
She has her own helper within school and because of her feeding difficulties has a special, portable back pack, that allows her to be fed intravenously through the nose.
Before her illness Ellie was a top pupil, and the chat and bright smile that made her a firm favourite at Sheffield, has also seen her settle quickly at school, said Claire, 30.
“She’s done brilliantly well. It was such a huge shock when she was first diagnosed and we now live our lives totally around Ellie. We don’t know what the future will hold for her....she could get worse or she could get better but all we can do is wait and see.
Claire added: “Our house is jam packed full of medical equipment and supplies. Ellie has to be watched 24 hours a day and we are up several times in the night with her. But we get through somehow”.
Before Christmas Ellie underwent pioneering surgery that saw the implant of a nerve stimulator under her arm.
The VNS (Vagus Nerve Stimulator) sends electrical impulses to the brain, and may help to reduce the number of seizures Ellie has. But it could take months to take effect, and is not guaranteed to work.
Ellie has weekly visits still to hospital, and tires easily.
But she has a new constant companion in Jasmine - a furry Lhaso Apso bundle that she carries everywhere in a little bag.
During the first weeks of her illness, Ellie’s body rejected every medication and diet. She was whisked to Great Ormond Street Hospital but doctors there could offer nothing new.
With added complications to her condition of progressive myclonic epilepsy, Ellie’s seizures vary from twitches to full body jerks, that can come in clusters of up to 20 minutes. And she has occasional “absences”, although she never remembers them.
“It’s heart rending,” said Sandra. “She sometimes tries to carry on with whatever she’s doing when a fit strikes, though her hearing blocks off. All we can do is hold her until it passes.
“But she’s able to come and stay with us like she used to, and we’re back on with her vegetable patch in our garden. Her legs are like knots in cotton but she has a go at anything - she was dancing on ice on her Wii the other day and I wondered what was going off!
“We hope she’ll build up her time at school and gain strength and weight. We’ve all drawn our strength from Ellie and how she’s coped with this. Nothing I say could do her justice”.