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About Emma English Czech English “Today is only one day in all the days that will ever be. But what will happen in all the other days that ever come can depend on what you do today.” My name is Jan, and together with my wife Anna, we have two daughters, Emma and Ella. We …
About Marta Marta was born in 2017.After delays reaching milestones she was diagnosed with CHAMP1 at 2 years old. Marta however carried on making progress and began trying to walk not long after this.At first she didn’t bend her knees and was very stiff. Which made walking on the uneven ground difficult and resulted in …
About Anna Being one of the oldest CHAMP’s diagnosed to date, Anna has a full story. We are positive that before the diagnosis was given every CHAMP parent had looked for answers, some explanation on how this happened to your child and what it means; anything that could explain things a bit more in detail …
About Tommy “He will not be a Charlie Brown”, said Elisa when she was back from the combined screening. Tommaso (Tommy), our CHAMP1ON has an older brother, Francesco.Francesco was called “Charlie Brown” because of the big round head by his paediatrician on the first medical visit. Tommy it turned out was no Charlie Brown while he …
About Sawyer This is Sawyer and he has the most amazing ability to make others smile and laugh.Sawyer was diagnosed with Champ1 in 2017 when he was 5 years old. Right from day one we began to face medical complexities including hypotonia and the inability to latch (including difficulties taking a bottle). Projectile vomiting and …
Jeff D’Angelo’s Story Shortly after the birth of our son JJ it was clear there were some complications and we knew JJ was different. We went to every specialist across the country and tried every therapy under the sun. It wasn’t until he was 4 years old, we discovered he was 1 of 37 kids …
The Road to Diagnosis: Jump Into Genetics Let me just tell you something. You never sit through a high school science class thinking that you’ll someday have a child who requires extensive genetic testing. If I had known, trust me, I would have paid a lot more attention. At this point in our journey I could …
About Sienna Our daughter Sienna was diagnosed with CHAMP1 in May 2022. We had suspected that she had a genetic condition as she had missed all the milestones that children typically achieve. However, we had no idea it would be something so rare and unknown! Sienna is an amazing little girl who has a love …
About Calum Calum will be 18 at the end of this year. When I look back over the years and all the milestones he failed to reach when he should have, I wish I could tell my younger self not to worry so much. When Calum was finally diagnosed with CHAMP1 gene mutation at …
About Lily Lily is our little unicorn. Unique and special in so many ways. At birth, Lily had trouble taking her bottle. The doctors tried everything, but in a few short days she was deemed failure to thrive. Lily had a nasogastric tube (NG tube) to help her get the formula she needed. At 3 …
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