Thalia

Happy

Birthday !

Every time she has an episode, there is a risk that her brain will be damaged. Over time, brain atrophy can permanently taker her off made progress. Although her speech, motor and cognitive functions are now impacted, they are likely to be further compromised as she grows.

Many patients with AHC may also suffer from a severe episode that causes suddenly irreversible degeneration: they remain bedridden and unable to speak for the rest of their lives. In other cases, the autonomic nervous system failure can lead to a sudden death.

We don't know if this will happen, or when it might happen to THALIA.

Thalia loves her family and the people around her.

She is very affectionate and has incredible strength. She always finds an opportunity to smile.

She also has a rare neurological disorder called alternating hemiplegia of childhood.

Every day Thalia has an “episode”, a bit like an epileptic seizure. These episodes may include paralysis, painful dystonia, aphasia, or uncontrolled muscle spasms and reduced level of consciousness, and may last for several days.

THALIA'S News

GOOD TIMES

Thalia just celebrated 11 years!!! We are happy to spend every moment with you. You are wonderful, strong and courageous! Your has illuminated our family for 11 years. You are an example for us all. Never stop believing and dreaming my Princess. Everything is possible!!

Thalia goes through challenges every day. Thalia has several medication treatments several times a day but it cannot cure her or even completely treat her symptoms. Despite the treatments Thalia still has an episode of AHC every day. She needs immediate rescue medication to relieve her symptoms

Thalia's pattern of AHC’s episodes has become more regular, but her symptoms continue to develop. If the episode is not caught in time Thalia suffers from dystonia, the muscles in her legs contract and she can neither walk nor stand, aphasia, she loses her speech and swallowing problems.

Even on her “good” days, Thalia now suffers from significant delays, particularly in motor and executive functions, but also cognitively. She has sessions with wonderful therapists 4 times a week, but it tires her out a lot and can lead to episodes.

Despite her painful symptoms and her special needs, Thalia does not let AHC steal her joy of living. She faces life with courage and joy. We want to give her the ability to continue to fight even harder

THALIA'S LIFE - Daily challenges.

THALIA'S Dreams

THALIA'S DREAMS

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