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Patient story

Tina Loader

by Shirley Loader

Hi, my name is Shirley and I adopted my three grandchildren. When they were born, Tina and Tanya were my first grandchildren and they are twins. They were born prematurely at six and half months.

Everything was fine until Tina reached two months old and got pneumonia. She was transported to a sick kids’ hospital where she underwent surgery for a diaphragmatic hernia. Then, when she was older they found that she has the trilogy of Fallot. When she went to hospital at three to get the hole in her heart repaired, they did a lung biopsy and found that she had pulmonary hypertension. The heart doctors and lung specialist told me that Tina needed a heart and lung transplant. Then as the years went by they told me Tina would only live until she was 15 or 16.

When she turned 18 she was transferred to the Toronto general hospital. Now they say she has VSD and PH. She is in the Tracleer program and she is also on oxygen full time. Tina can do very little at this time and the doctors aren’t saying too much.

I’m very upset and I don’t know what I would do without her. She has brought happiness to my life although I’m her only caregiver. She is such a fighter considering she weighed in at one and half pounds at birth. I am hoping they can find a cure for this sickness and would like to help support it in any way possible.

I’m here if anyone would like to talk.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.