Free Tianna's Heart
Our Story
Tianna is 17 and the third of our 4 beautiful daughters and a senior in high school. A few years ago our athletic, sports loving, saxophone playing daughter began experiencing fatigue and unexplained instances where she was unable to catch her breath. We sought answers from doctors and for two years she was told it must be in her head and was even referred to a psychiatrist! BUT when she had unexplained abdominal pain they did an ultrasound that revealed a picture they decided to investigate with a CT scan.
It's RARE
That was when they found that Tianna was a 1 in 30 MILLION case as a minor diagnosed with a symptomatic pericardial cyst! (The general population rate is a more commom 1 in 100,000) Benign in many, Tianna's congenital pericardial cyst affects her greatly. A paericardial cyst is a cyst on the membrane that encloses the heart. Tianna's cyst is in a position where it partially covers and can irritate the nerve that goes to her diaphragm.
She was referred to a cardiologist where the consensus was split 80/20 in favor of removal - and the research indicated that the VATS cardiothoracic procedure is best. So we went to see one of the few Cardio Thoracic surgeons in Winnipeg.
A Lack of Canadian Expertise
He has never personally dealt with a case like this, and doesn't know anyone in Canada who has removed one. Based on the risk to her Phrenic nerve and his personal belief it doesn't affect her enough - won't recommend surgery.
We need this money to take Tianna to the Mayo Clinic in Minneapolis for the necessary tests to get her help from people who have dealt with her condition and have actually removed similar cysts as that expertise does not exist here in Canada. We need $7000 USD ($9800 CDN) just for the deposit for the medical tests. The tests are expected to end up closer $11000 USD ($14500 CDN) Any additonal raised will help with travel expenses, housing and meals to drive from Winnipeg to Minneapolis (the majority of which we are plannign to cover, partly with Michael working a second job to pay for) and stay for the duration of her consultations (1 week expected - 6 nights, 16 hours of driving etc). And this is JUST so we can get through the first stage - gaining the medical documentation and opinions from qualified experts who have dealt with this condition before that will convince the Canadian medical system to cover her surgery. Then we need to prove to the doctors in Manitoba that she needs this cyst removed so she can live a healthy life again.
A Prime Example
I while back in my research, I was able to find surgery ona 4 year old girl witht he smae symptoms and similar placement of a cyst. and in the U.S. they have the expertise to remove it and this fopur year old girl recovered nicely. if you aren't squeamish - here is a link to that surgery -
https://www.youtube.com/shared?ci=y-meUvy5OXk
At this point, we need to prove to Manitoba and Canada that the doctors here aren't informed enough about this condition and it's possible complications and that Tianna needs it removed. This is not raising funds for the surgery - yet. We believe Manitoba will do what's right when we have a course of action designed by a surgeon experiened with these cysts.
Let's Get Tianna Back to a Normal Life
Tianna loves life - She wants to be able to play jazz music, enjoy casual sports and just be a normal young adult - and we want to see the sparkle of joy in her eye again that this constant fatigue drains from her!
How you can help
First, PLEASE share and spread this campaign
We believe there are enough people out there who are willing to give just $20 to make this happen.
Please consider donating what you can. Ideally we want to have that deposit to the Mayo Clinic on or before April 1, 2017. The sooner we can get to the Mayo - the more likely it is we can have her surgery done before she starts University in the fall of 2017. It would be amazing for her to have the normal life of a young college student. THANKS for your help!
DEADLINE UPDATE -
As of April 20 - we don't quite have enough for that Mayo deposit but will once we have the funds already donated release. Our goal dagte is now June 15 as we have a fundraiser beign planned for early June with more details to come soon! We have requested an appointment in May on faith and they will tentatively set one up once we can provide her medical records. We are waiting for Children's Hospital and Health Sciences Centre to release Tianna's medical records and they are now over a week past the legal deadline to do so and contacting them is a great difficulty. Please pray that is taken care of shortly (The Cildren's Variety Herat Centre has provide us with what they held in a wonderful timely fashion!) Once we send those off - we will post another update with appointment dates!