221 ~ One year younger – 1/2 ~

“I love you mom.”

Dysautonomia had drained Christina Tournant dry of hope, she felt her fight was over, and jumped to her death.

At 8:25pm her body was found at the foot of a seven story parking garage at the Tampa International Airport.
In her car were pictures of her with family and friends with notes on the back of them thanking them and encouraging them to find joy in life.

On her mother’s photo she wrote:

“Mama, You are perfect. Thank you for being my best friend. Love you to pieces. Sorry, I couldn’t keep fighting. Love, Your full on dweeb” (which is something mom and daughter called each other and laughed about)

Christina’s suffering from Dysautonomia and Ehlers Danlos Syndrome (EDS), which commonly accompanies Dysautonomia, was met with dismissal and negligence by the medical community.

Her doctors are not to blame, but I feel obligated to share Christina’s tragic fate and open the door to a conversation in awareness.

More training, education, and activism in the Dysautonomia community will prevent people like Christina and myself from feeling that the only way out of this invisible and debilitating condition is to end their own life.

I had the opportunity to connect with Christina’s superstar mother, Tava, and hear a bit more about her story. Tava is on the board of The Dysautonomia Project, and is now an outspoken activist for the condition.

She has warrior strength and resiliency, and continues to find purpose in Christina’s death despite the profound repercussions it has had on her, her family and friends. Tava, thank you for allowing me to share your incredible daughter’s journey. You inspire me.

Tava describes that she, “…never met an obstacle she could not or would not conquer.” She faced the world with grace and vigor.

Christina’s health problems started early, she was diagnosed with Hypohydrosis at age 3. This condition is the inability to sweat, but what the Tournant family didn’t know, is that Hypohydrosis is a malfunctioning of the autonomic nervous system.

She began experiencing GI problems that worsened upon puberty.
Pain and extreme stomach distention followed every meal as she was put on medications, a restrictive diet, and underwent multiple tests.

Nothing worked, and no one knew what was wrong. Joint pain, brain fog, severe headaches, trembling and eye twitching followed in the years to come as Tava and Christina saw a neurologist and a psychiatrist who gave her some anxiety reducing tools and reassured her nothing was wrong.

She was told, “Since she was doing well in school and athletics, her issue couldn’t be too serious.” She saw a variety of doctors, particularly G.I. Doctors, and was told this same thing over and over again.

However, the doctor’s didn’t know Christina, she was a fighter and would endure all the pain quietly in order to do what needed to be done. Tava desperately tried to explain this to doctors and was labeled an “anxious mom.”

Frustration consumed them following every appointment as they continued to swim in this pool of uncertainty and desperation.

Christina said one day, “Just tell me I have brain cancer or anything, really, and at least I’ll know if I’m going to be okay or not, and if there is something to help.” These very same words have left my lips too as the uncertainty also drove me into a place where cancer would be a better diagnosis than another blank stare.

Eventually, Christina was diagnosed with POTS. POTS is a form of dysautonomia characterized by a rapid heart rate and drop in blood pressure upon standing. POTS causes many debilitating symptoms, and leaves some wheelchair bound.

However, no doctor had ever suggested this, and no doctor knew of any specialist for them to see. Still Christina’s other doctors did not seem to be concerned about her heart situation. Tava knew something more had to be wrong, and insisted that Christina have a colonoscopy done despite her GI doctor telling her it was not necessary.

Christina cried tears of joy in the recovery room after discovering she had gastroparesis and Ulcerative Colitis. In late July, she was finally ‘officially’ diagnosed with Dysautonomia by a Cardiologist, but doctors told her that, “her case was mild, and she would likely grow out of her symptoms.”

“Christina was drowning in relentless waves of health obstacles…”