Brave Girls in Bid to Put Smiles on the Faces of Other Affected Children

Two brave little girls putting aside their own complex conditions to put smiles on the faces of other affected children are being backed by their local AM.

When Alyn and Deeside Assembly Member Carl Sargeant heard about Heidi Rogerson and Evie Davies’s 5-mile walk and wheelchair trek for the charity Miles of Smiles on April 23 he was overwhelmed by their kindness.

Heidi, nine, from Garden City has Ehlers-Danlos syndrome, a collagen condition that causes her severe pain and all her joints to dislocate.

She also has the rare chromosome disorder 15q 11.2 microdeletion, cerebral palsy, Beals syndrome, developmental dysplasia of the hip and an autistic spectrum disorder.

Heidi has to go to Alder Hey children’s hospital in Liverpool every six months where she is under the orthopaedic team.

Since she was just six months old she has undergone various major operations, the most recent being nine hours of reconstruction work on her pelvis – which also included having both legs broken for the second time.

Heidi needs a power wheelchair which she will be able to have when the family move into a specially adapted bungalow. Mr Sargeant is trying to help the Rogersons achieve this.

Despite all her own challenges Heidi and her family always like to give back and help others.

Heidi enjoys horse riding with the Riding for the Disabled Association and has previously raised money for them, as well as the neuroblastoma cancer charity.

“She likes helping other kids and there’s no stopping her doing anything,” dad Martin said of his plucky daughter.
“We’ve had some good support from Miles of Smiles and want to help them send disabled and life-limited children to Disneyland Paris this year for the 25th anniversary celebrations.”

Heidi will be joined on the day by her friend Evie Davies, a fellow pupil at Ysgol Pen Coch in Flint. Seven-year-old Evie, from Treuddyn, has the severe epileptic condition West syndrome, cerebral palsy, severe development delays and is fed through a peg in her stomach.

She has scoliosis of the spine, has recently had double hip surgery and will find out soon whether she also has peho syndrome.

Evie is non-verbal and communicates in other ways. She has had great success using eye-gaze technology which she has used at Ysgol Pen Coch and at respite centre Ty Gobaith in Conwy. Her mum Linda, who will be pushing her on the day, would eventually like to fundraise for Evie to have this technology at home.