Meet Loraya, she is 4, 5 later this year!
Loraya was diagnosed with her cardiac condition tetralogy of fallot during pregnancy along with exomphalos the rest was after she was born.
Loraya is seriously cheeky, she is a pleasure to be around and often attends our events with her family.
Loraya’s favourite thing to do is play with her babies and do arts and crafts and she loves Disney movies!
Loraya is CPAP dependant for 16 hours a day, oxygen dependant for her remainder 2 4hour “breaks” off CPAP.
She is fed via an NG tube and doesn’t take anything orally.
Loraya tires easy and falls over due to her flat feet and hypotonia so uses a wheelchair, she can’t go out when it’s too cold as she cannot hold her body temperature well.
Despite everything, Loraya is a very happy girl, she never lets things get in her way and is very determined.
Loraya currently has a leaky pulmonary valve that needs replacing and will require a pacemaker in the future she also gastroenterology issues which is currently under investigation. She spent the first 16 months of life in hospital undergoing heart surgeries, surgery on her oesophagus and battled many illnesses.
Loraya has a long list of conditions which we have detailed below but mum would like us to highlight Tracheo-oesophageal fistula & Oesophageal atresia.
“When Loraya was born the biggest shock was finding out about the tof/oa as until Loraya was born I didn’t know what it was, there is lots of medical professionals that do not understand the condition as although it’s surgically repaired it’s not fixed or cured and can have different life long complications – more information can be found here - What is OA/TOF? > TOFS | OA/TOF Support”
Her current diagnoses are
Tetralogy of Fallot which is a heart condition consisting of-
Ventricular septal defect
Atrial septal defect
Double outlet right ventricle
Additional Ventricular septal defect.
Type 2 AV block
Then she was born with
Oesophageal atresia (tof/oa)
She also has
Cpap dependant (16hours)
Vocal cord palsy
Low Body temperature
And Developmental delay