Eastbourne boy diagnosed with life-changing syndrome
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Two-year-old Christopher Csapo was diagnosed with Angelman syndrome in October this year when his mum Judit Boder noticed he was having issues with sleeping and eating, and regular illnesses.
Judit said: “Our family is still struggling to accept the diagnosis especially me as a mum. I’m worried so much about him due to his febrile seizures. Once he gets sick he gets seizures however he’s on prevention medication but it takes time to work. I especially worry a lot about his future. What his life is going to be like and what will happen to him once we’re too old to look after him. And furthermore we have a daughter who’s only five so she is also trying to understand that her brother needs additional support but she knows the term now – Angelman syndrome – so she always colours things blue for him since blue is the Angelman syndrome colour.”
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Hide AdAngelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities. A person with Angelman syndrome will have a near-normal life expectancy, but they will need support throughout their life. A child with Angelman syndrome will begin to show signs of delayed development at around 6-12 months of age, such as being unable to sit unsupported or make babbling noises. It is also known as happy puppet/baby syndrome.
Later, they may not speak at all or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems. The movement of a child with Angelman syndrome will also be affected.
Judit said: “For me as a mum it’s very hard to see my child like this. That’s why I’d like to raise awareness since even many healthcare professionals do not know much about Angelman syndrome. I want to share our story to raise awareness since many people do not know about this syndrome and raise funds for FAST UK (Foundation for Angelman Syndrome Therapeutics) to develop treatments.”
Keep up with Christopher’s journey on Instagram: chris.angel.as