KEY FOCUS AREAS
To create awareness around infant myocarditis, and closely related conditions, in the medical community and among parents through the development of educational material
When Conor was diagnosed with myocarditis, we had never heard of it. We were so overwhelmed by this whole new world of medical and cardiac stuff and terminology. The shock and anxiety that comes with being told your child has a slim chance of survival also supersedes all else that you cant seem to think straight, never mind process what you are being told. We would have loved some documentation to be able to read about it, as opposed to Dr Google.
To address the issue of lack of information, we worked with the Paediatric Cardiac Society of South Africa to develop a downloadable brochure that has been made available to paediatric cardiologists nationwide. This brochure provides doctors with a good general resource to give to parents and family members of infants with myocarditis as a source of credible information on the disease and what they can expect from treatment.
To establish counselling and resource
support for families whose children are
affected by infant myocarditis
We would like to offer families of infant myocarditis patients online support resources to manage the traumatic ICU times, and often infant mortality as well, in addition to providing financial aid for those parents who can’t afford transport costs to be at their baby’s bedside or to take their children back to the hospital for follow-ups (which also helps to add to research knowledge).
Through our Angel Wings and Angels of Africa projects, we donate Angel Outfits to bereaved families of infant angels.
To raise funds for further research into
myocarditis, especially in neonates and
infants up to six months old
The Conor James Foundation aims to provide financial support to current research being undertaken around treatment and prevention of myocarditis, as well as offering part or whatever we can raise as an unrestricted research grant for a directed study into myocarditis in infants younger than 6 months.