KATJA
“Everybody should be given the chance to express themselves as to how they truly are, which is why I am delighted to be taking part in the Rare Project!”
“Katja is a kind and loving girl who absolutely adores music and can always be heard singing around the house. She is an avid reader and spends a lot of time writing short stories herself. She has an infectious warmth and happiness about her and loves being around her family and friends.”
Katja was born with Moebius Syndrome - a rare congenital disease that causes paralysis of certain cranial nerves - especially those that control the muscles of the face, eyes and ears. As a result, Katja is unable to smile, frown or blink and has some difficulties with her hearing. She is also unable to move her eyes from left to right, which affects her co-ordination and balance. She additionally suffers from muscle weakness that triggers scoliosis of the spine. None of this stop her from always trying her best at things - she recently gained her green belt in Karate and her Grade 2 Piano.
“Although she faces and has faced many challenges and prejudices in her life, Katja does not let this hold her back. Those that take the time to look past her exterior will know that she is quietly strong and determined and handles things with admirable dignity and without complaint (most of the time!).”
Her family are extremely proud of her and the things that she has already achieved for herself.
FIND OUT MORE
MOEBIUS SYNDROME
Moebius Syndrome is a rare neurological disorder characterized by weakness or paralysis (palsy) of multiple cranial nerves - most often the 6th (abducens) and 7th (facial) nerves. Other cranial nerves are sometimes affected. The disorder is present at birth (congenital). If the 7th nerve is involved, the individual with Moebius Syndrome is unable to smile, frown, pucker the lips, raise the eyebrows, or close the eyelids. If the 6th nerve is affected, the eye cannot turn outward past the midline. Other abnormalities include underdevelopment of the pectoral muscles and defects of the limbs. Moebius Syndrome is not progressive. The exact cause is unknown. It appears to occur randomly (and sporadically) in most cases; however, data shows there is some prevalence in families suggesting that there may be a genetic component.
To learn more about Moebius Syndrome, click here.
Source: https://rarediseases.org/rare-diseases/moebius-syndrome/
Moebius Syndrome FOUNDATION
The Moebius Syndrome Foundation are a US based foundation whose mission is:
‘To provide information and support to individuals with Moebius Syndrome and their families, promote greater awareness and understanding of Moebius Syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius Syndrome and its associated conditions.’
To find out more about how the Moebius Syndrome Foundation can support you or your family, click here.
Source: https://moebiussyndrome.org/who-we-are/mission-and-history/
Don't forget to visit and 'Like' our Facebook page too so we can keep you up to date with our new rare stories by clicking here.
