Community · Families
Family Stories
Every ZTTK journey is unique — and none of us walks it alone. These stories are shared with courage and love by the families who live them.
Harpor's Story
“We're hearing a voice we once weren't sure we would hear.”
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Blake's Story
My little love right here just gives me all the feels. The day Blake was born was emotional.
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Ava's Story (South Carolina)
Hi, my name is Ava and I am 14 years old. I live in South Carolina and I have 2 older sisters. I was born with Hypotonia and I have intellectual disabilities, ADHD, Autism and ZTTK Syndrome.
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Lainey's Story
Lainey was born September 23rd, 2014. Pregnancy was followed closely be a specialist because she wasn't growing well IUGR she weighed 5lbs 3oz and was 16in long.
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Yara's Story
I am Yara Jaafar from Lebanon. I was born on February 7, 2020.
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Emma's Story
My daughter Emma Nora was born at 3 pounds, 16”. She was Baby B and her twin sister Ella, Baby A. The day they were born Emma was measured by the MFM specialist at just over 5#.
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Ömer's Story
Hi, my name is Ömer. I live in Turkey. I was born with bilateral pes equinovarus and horseshoe kidney. In the process of growth my parents recognised infantile muscular hypotonia.
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Vincent's Story
Hi my name is Vincent and I’d like to tell you something about me. I live with my Mummy, Daddy and big brother Charlie (3) in Victoria, Australia.
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Russell's Story
When Russell was delivered in 2000 via C-section at 36 weeks, 11;29pm, 3 pounds 14 ounces, 16 inches, we were just first time parents with a premie.
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Yovani's Story
Our son Yovani, 5 years, was diagnosed in March 2017.
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Elizabeth's Story
Our daughter Elizabeth was born prematurely in 2013 after a difficult pregnancy, and she was diagnosed in 2015 with ZTTK Syndrome.
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Riley Rose's Story
Riley Rose was born in Sydney, Australia one week overdue, weighed 2.5kg and was 46cm tall. Prior to birth all tests and scans were normal.
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Emma Olivia's Story
Emma Olivia was born on November 17, 2017. She was diagnosed with ZTTK Syndrome at 1 1/2yrs old.
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Ava's Story (Belfast)
Ava is a twin and was born in Northern Ireland, at the Belfast Royal hospital on 21/10/19, her brother Olly doesn't have any syndromes or health problems.
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Toby's Story
We are the Owen family from Scotland. We now live in Texas. We are Mom , Dad, sister and Toby (our boy with ZTTK syndrome).
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Audra's Story
Audra joined our family through the blessing of adoption. She spent the first 5 and a half years of her life living in an orphanage in China.
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River's Story
River Nichols was born at 5lbs 13oz via c-section due to being breached.
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Aleks's Story
This smiling boy is like a goldfish - very special, it's a rare specimen;) And I'm not saying that only because I'm his mother and I love him the most;) Aleks was born healthy, but as it turns out he…
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Nicolo's Story
Hello, we are from Romania, but we live in Italy. Nicolo was born prematurely at 33 weeks. He stayed in the hospital for 6 weeks.
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April's Story
Our ZTTK miracle’s name is April. She was born in October 2013, and we live in Manchester, U.K.
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Aiden's Story
Aiden is and easy-going 3.5-year-old little boy that loves water and swimming, watching the news and playing with his rings and throwing himself in the ball pit.
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Riggs's Story
Our ZTTK miracle’s name is Riggs. He was born in November of 2012. His first hours of life were crazy and fast!
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Carson's Story
We waited 8 long years for our boy! After what seemed like a normal pregnancy, my placenta became depleted and Carson had quit growing at 37 weeks.
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