Published on 28.09.2020
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Tess was diagnosed at 14 months old with OTC (ornithine transcarbamylase) deficiency, a genetic disease characterized by the abnormal accumulation in the body of toxic compounds resulting from the breakdown of proteins. But before the diagnosis of this disease, these 14 months were a period of wandering that I would not wish to any parent!
Since her birth, Tess had been vomiting, shaking, and never really sleeping. Worried, we went to 5 different doctors who either failed to diagnose her or told me it was just nasopharyngitis. But we knew something was wrong.
One day, Tess became lethargic. I called the emergency room and they immediately referred me to the emergency room. There, the doctors found nothing wrong. On our way out, a nurse, seeing us helpless, directed us to the hospital in Rheims. That evening, this lady saved our little one's life. I will never forget her.
After a battery of tests, we were able to put a name to Tess's illness and begin treatment. Then Tess was transferred to the Necker-Enfants malades AP-HP hospital in Paris, where we gradually learned to live with her disease, and I had to stop working.
At the age of 4, after years of strict dieting, the doctors told us that a liver transplant was imperative for Tess to grow up normally. The operation went well and today Tess is 10 years old, doing well, and going back to school normally.
To take care of our travels, our accommodation near the hospital, and to compensate for my work stoppage, we created the association "Together for Tess". Now that Tess is doing better, it was important for us to donate the funds to Imagine.
We support the Imagine Institute so that no other parent goes through what we did with Tess's genetic disease: the fear of the unknown, of tomorrow, and the lack of resources in the face of diagnostic errancy. No parent is prepared to go through this. We choose not to support research specifically for Tess's disease because I believe that, regardless of their child's disease, every parent should be able to find answers and not experience the black hole we have been through.
Lydia B.