Companion card application

The following are the answers that we are submitting for the complicated question on the application for a companion card.

Describe your need for assistance in the areas of mobility, communication, self-care, learning and planning.
Raphael was diagnosed with CHARGE syndrome on 12/1/2007. Raphael has a number of factors caused by this syndrome that makes it difficult for him to attend community activities and events.

Raphael has respiratory problems that could potentially require immediate first aid and medical aid. Raphael has previously quickly descended into respiratory problems that have required hospitalisation on a number of occasions. Early identification of the warning signs has been important on these occasions in obtaining medical aid in time.

Raphael has propensity to vomit multiple times a week due to nerve problems. Raphael requires assistance while vomiting to ensure that it happens in a socially acceptable way (for instance, not in a public swimming pool as nearly happened on one occasion). But more importantly it is necessary to make sure that his airway is not compromised after vomiting. Equipment to cope with his vomiting (cloths, water, change of clothes, and bags) need to be taken everywhere he goes which he is not capable of carrying himself.

Raphael has no sense of balance, he is blind in his left eye and has vision problems with his right eye.

Raphael's vestibule (sense of balance) is completely malformed and he receives no useful information from this organ. Raphael currently cannot walk and, although it is hoped that physiotherapy and occupational therapy will eventually enable him to do so, his lack of depth perception and decreased field of vision will always make mobility and orientation a difficult task without the aid of someone to guide him.

Raphael has a moderate to severe hearing loss and partially paralysed vocal chords making verbal communication very difficult for him. Raphael uses hearing aids but these cannot be worn on all occasions (for example while swimming or air travel) and his external ear malformation means that hearing aids are not comfortable for him to wear for any length of time. Raphael may be able to communicate with sign language, in these instances when he does not wear his hearing aids, but this will require an interpreter to be with him.

Raphael's paediatrician has said that she only trusts a limited number of people with the care of Raphael because of his complicated medical problems: Royal Hobart Hospital Paediatric Unit, The Royal Children's Hospital (in Melbourne), and us (his parents). Even the Commonwealth Carer Respite Centre refuses to look after him because of his complicated high needs. This effectively means that he cannot go anywhere without one of us being with him.

Please provide the name, date and outcomes of any formal assessments of your condition.

Raphael was diagnosed with CHARGE syndrome by a Geneticist on 12/1/2007.

An Ophthalmologist stated that Raphael has "very limited or no useful vision in his left eye" (7/2/2007) and on 5/6/2007 another ophthalmologist advised us of another serious eye defect in Raphael's right eye that limits his field of vision in that eye.

Raphael has had a Barium Swallow on 17/5/2006 that identified significant gastro-oesophageal reflux and aspiration.

Raphael has had numerous audiological tests including ABR (Auditory Brainstem Response) and VROA (Visual Response Orientation Audiometry) tests to determine his hearing level. He has been classified as having a moderate to severe hearing loss.

Raphael had an MRI scan on 18/12/2006 that identified severe eye and ear malformations including complete deformity of the vestibular semi-circular canals (sense of balance).

Raphael has 25 medical professionals and 8 education professionals who look after his complicated case. We have a whole folder full of reports on his condition. I have summarised a very limited number of the reports here.

Medical professionals:

• Audiologist [RHH & Aus Hearing]
• Dietician
• Ear Nose and Throat Doctor (ENT) (x2)
• General Practitioner
• Geneticist
• Intensivist (x2) [RHH]
• Occupational therapist [CHC]
• Ophthalmologist (eye surgeon)
• Orthoptist [RHH]
• Osteopath
• Paediatric Anaesthetist (x2)
• Paediatric Cardiologist
• Paediatric home care nurse (x2) [RHH]
• Paediatric Surgeon
• Paediatrician
• Physiotherapist [CHC]
• Social worker [CHC]
• Speech Pathologist [RHH (x2) & CHC]

Educational Professionals:

• Deaf/Blind teacher [RIDBC]
• Gross motor skills teacher [gymbaroo]
• Hearing consultant
• Occupational therapist [ELT]
• Physiotherapist [ELT]
• Speech pathologist [ELT]
• Teacher [ELT]
• Vision consultant [ELT]