[ Post a Response | ECHO Dialogue ]
Posted by Frances
on October 28, 2009, 19:10:48
195.93.21.35
Is there anyone out there who feels as isolated as I do? Absolutely every fact sheet, support group, forum etc etc refers to congenital heart conditions. Surely I can't be the only mother of a teenager who wasn't born with a heart condition? Even when I go down the list of medical conditions on the groups my son's isn't listed (Aortic Regurgitation).
I find it very difficult knowing that my 15 yr old has overnight stopped being a supposedly healthy, active teenager and now has the energy levels of an old man.
At the moment, the only other person I have found who has my son's heart condition and was also considered healthy up until having a shock diagnosis at the age of 21 is the footballer Kanu.
I have considered writing to him, but keep putting it off.
For those who have children with congenital heart conditions, it must have been so frightening for you. Personally, I am finding it a bit difficult at the moment to keep a brave face on.
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