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Every case of mito is unique, just like the people it affects. Though never the same, the journeys of patients may have similarities. Thank you to the following people who have generously shared their journey.

Stories below are in English, Italian, Spanish, Dutch and German.

Matei's Story

Matei was born on August 5th 2018, being an extremely healthy child. He has had an exciting development period. From the newborn to an active toddler he reached all the milestones that a child is doing. He was laughing so much, and, he was enjoying so much making others laughing. Before choosing his name, we called him “Happy”.

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La Storia di Sara - Sara's Story

Sara

Sara è giovane, ha 26 anni e vive a Padova insieme alla famiglia: i genitori e la sorella più piccola. Ha un’autonomia limitata nel camminare o nel fare qualsiasi attività fisica a causa di una malattia mitocondriale che la rende intollerante allo sforzo.

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La Storia di Marzia - Marzia's Story

Marzia

Tutto è iniziato il 17 dicembre del 2011, quando sono stata ricoverata d’urgenza per un’emergenza grave, il disseccamento della carotide. Sono stata in ospedale per tre mesi senza che però sia emerso il sospetto della mia malattia.

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La Story di Margherita - Margherita's Story

Margherita

Margherita, 42 anni, ragioniera, lavorava in un negozio di arredamenti industriali. Ha smesso quando è arrivato Peppone, suo figlio, che lei racconta così: Peppone è bello come il sole, è pacioccoso.

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La Storia di Gabriella - Gabriella's Story

Photo of Gabriella

Mio figlio si è ammalato quando aveva vent’anni non ancora compiuti, la diagnosi era neuropatia ottica ereditaria di Leber (LHON), una malattia mitocondriale che colpisce il nervo ottico.

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Shelley's Story 

Photo of Shelley

I had never heard of mitochondrial disease until 3 years ago. My journey started when my mother experienced a rapid decline in health, losing muscle in most parts of her body and struggling to breathe. Her, my older brother and I all experienced hearing loss at a young age...

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Melinda's Story 

Photo of Melinda

When I was 20, I my left eyelid started to droop. This was my first symptom of mitochondrial disease (mito), but it took 17 years for me to receive a diagnosis.

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Bert's Verhaal - Bert's Story

Photo of Bert

Onze zoon, Bert, is geboren op 21 december 1986. Bij Bert waren er al van bij de geboorte kleine problemen. De voornaamste waren: veelvuldig braken, zijn voeding niet verdragen, in april 1987 buisjes in beide oren, in mei SIDS-registratie: die gestoord was, in oktober 1987 opname in Leuven: dit wegens een Hemophilus influenza sepsis, in januari 1988 is er een verminderde immuniteit vastgesteld nl: de fagocytose en tevens een vrij laag IgG voor de aantal doorgemaakte infecties.

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Maddie's Story 

Photo of Maddie

Maddie’s journey began in 2011. Her mother, Sara, quit her job to stay at home to take care of their new baby. Sara could tell something wasn’t quite right with her daughter. Being with Maddie all day allowed Sara to track Maddie’s changes, but she couldn’t put her finger on what was wrong.

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Garry's Story 

Photo of Gary

Garry Kruger didn’t understand what was happening, but he does remember that his symptoms started in 1999. He was experiencing leg and foot pain, lower back pain and he noticed that his eyelids appeared to be drooping.

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Joe's Story 

Photo of Joe

Joe was looking toward a bright future. While in high school, he remembers that life revolved around hanging out with friends and playing sports. Joe was at the top of his class in academics, was on his varsity soccer team and was the captain of his robotics team. It was in the robotics lab at school when Joe realized something just wasn’t right with his vision.

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Marco's Verhaal - Marco's Story

Ons jongste zoontje, Marco, heeft een motorische en mentale handicap ten gevolge van een stofwisselingsziekte. Toen ik dit verdict voor het eerst te horen kreeg dacht ik dat ik nooit nog zou kunnen lachen, nooit meer echt gelukkig kon zijn.

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Wieland's Geschichte - Wieland's Story

Wieland

Wieland Rödel leidet an einer seltenen Erkrankung der Muskelzellen / Selbsthiflegruppe für Betroffene....

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Archer's Story

Archer

My name is Jane Cleary and this is my story. Sadly I lost my baby Archer Banjo Cleary on the 26th April 2013 to suspected mitochondrial disease, he was just shy of turning 8 months.

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La Historia de Emy - Emy's Story

Emy

Soy Emy, Esta es mi historia...

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La Historia de Tália - Tália's Story

Talia

After 11 years of searching Tália was finally diagnosed with a type of mitochondrial disease caused by a gene mutation never seen before.

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Marit's Verhaal - Marit's Story

Marit

Marit feels that she is more than just her disease. It does require controlling your own life and making your own choices.

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