She Couldn’t, But Now She Can: Tatiana Ranftl

May 02,2019

Tatiana was three months shy of her sixth birthday when she was diagnosed with idiopathic pulmonary hypertension. Before her diagnosis one of our favorite family pastimes was to go to the Wisconsin Dells and enjoy all the water rides. After she was diagnosed, we stopped going because Tati couldn’t enjoy any of the water rides or utilize the go-carts because her heart was too weak. She just felt excluded from the activities.

She has been unable to do many things such as ride a bikes, or participate in any sports. She doesn’t go to most birthday parties, especially if it is a pool party, or at a place that has amusement rides. Not that she doesn’t want to go, but she would be the only one not participating in the physical activities.

Tati has been through so much these past seven years. She’s been in and out of hospitals more times than I can think of. This last stretch, she was in the hospital for a month and a half. She had to have open heart surgery to have a procedure done to place a Potts Shunt. Our little girl has endured so much pain that it was difficult to see and stay strong for her.

Tati is the strongest person I know, and she’s not only strong, but has a loving heart, a beautiful personality, and truly cares about the people in her life and those around her. No matter how much pain she’s in or what she’s going through, her first thought is to try and make things easier on us. She is such a special girl and I want so much to be able to make her happy in even just the little things.

One thing that she wishes for more than anything in this world is to be able to get back into a pool. This small thing that so many people take for granted would mean the world to her. Tati receives medication called Veletri through an infusion pump and as a result she can’t submerge herself in water. Up until just recently she had lost all hope of ever swimming in a pool because there is no cure for idiopathic pulmonary hypertension, and she is in the aggressive stages of this disease.

In our support group, another PH parent posted information about a wetsuit and how her child could get in the water with it. We thought that was just amazing and asked for information regarding the price and where we can purchase it. The problem is that we can’t afford to purchase the wetsuit for her. But now, thanks to the Team PHenomenal Hope Unmet Needs Patient Impact Fund, we will be able to purchase a wetsuit for Tati, and this opportunity has made her so very happy.

Thank you, Team PH, so much for making this possible for our Tati. Words cannot explain how happy this makes us all.

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