My daughter has a heart condition which makes her lose conciousness anytime and anywhere,which is terrifying for her.
Nationwide
My daughter is a fit,funny caring girl. She is now too scared to leave the house. She has a condition which makes her go unconscious without any warning whatsoever.This can happen when walking or standing and even sitting.It can happen anywhere.This is a picture of her having yet another test. She has a device implanted near her heart to track these events which are daily or up to three times a day. As you can imagine these are terrifying and extremely dangerous,these unconscious episodes have caused concussions,several injuries to her neck as well as bruises and swelling everywhere else.She can no longer attend school and this condition has isolated her from her friends and sports which she loved.The worst thing in the world as a parent is not being able to help your own child. We live way down south and need to travel to Auckland to see a private specialist.This will involve a stay of at least a week.Due to the waiting list at the public hospital we now see a private cardiologist.Some of the tests she needs are not available at Dunedin.I have always worked hard to support my family and have now lost one of my part time jobs because i cant be there consistently, our medical bills are enormous as nothing is covered by a.c.c. She is incredibly brave, going unconscious anytime or anywhere. She may need to be fitted with a pacemaker to correct the blood pressure which plummets. She needs to get back to school and continue her life as a sports mad,witty,guitar playing teenager.I would do anything to have her back the way she was before that terrible day she came home from school and after telling me how her day was she said "oh yeah by the way, I fainted at school today" It started as innocently as that. That has turned into a condition which has been devastating but it has bought us a lot of strength too.Her friends have been amazing and have been really supportive.The condition she has affects her entire nervous system,things that happen naturally with peoples blood pressure and heart do not work properly with her. She has a type of neurocardiogenic syncope/P.O.Ts which generally speaking means her blood pressure drops and her heart races to just over 150 and she loses consciousness, unfortunately this happens in an instant and she gets no warning.The exact cause of her syncope/ P.O.Ts is still to be determined and can be caused by a variety of conditions,diseases and disorders.We need a bit of help. Im a single mum and we are struggling. We are constantly at A & E with injuries, G.P for checkups or calling ambulances.Our life revolves around the hospital for tests and more tests. Almost every day we have to visit the cardiac unit at the hospital to have her heart device read. We have never asked for help like this and are very, very grateful for anything received.
Update for April lily (girl who goes unconscious) 16 December 2014
Hi to everyone. We have had a busy month.More tests, more Drs.We have been to Christchurch hospital and stayed at the wonderful Ronald McDonald house.Just had our initial consultation in Auckland.Now we are getting a better picture of whats wrong.We need to travel back to Auckland in approx 4-5 weeks , this will involve a stay and tests on her central nervous system. (dates still to be determined).We have a way to go with fundraising and are trying to cut corners and costs as much as we can. To everyone who has given to our cause and supported us in other ways,thankyou. Thankyou doesnt even say it enough, the support and kind words seem to come on the darkest days and really do help. April cannot stand more than 5 minutes without fainting we are still trying different medications, and there is hope esp with the wonderful Prof Smith in Auckland.Merry Christmas to everyone, I hope you all have a safe and happy holiday season.
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