Twins with Friedreich’s ataxia walk the talk
The two support each other in every way possible and they are not letting the illness stop them from living their lives to the fullest.
FRIEDREICH’S ataxia (also called FA or FRDA) is a rare inherited disease that causes nervous system damage and movement problems.
Annika and Chené Venter (13) took part in the Spar ladies challenge road race, walking 5km, completing the challenge and bragging with their well-deserved medals. Friedreich’s ataxia usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time.
The spinal cord and peripheral nerves degenerate, becoming thinner. The cerebellum, part of the brain that coordinates balance and movement, also degenerates to a lesser extent. This damage results in awkward, unsteady movements and impaired sensory functions. The disorder also causes problems in the heart and spine, and some people with the condition develop diabetes. The disorder does not affect thinking and reasoning abilities (cognitive functions).
“It was very difficult to walk, although we finished the race and are both very proud of that. We just wanted McDonalds, but decided the race was better,” laughed the twins. They need support and special shoes because of the loss of sensation. Although this is a very rare illness, both twins suffer with the inherited illness as they share the same genetic code.
The first symptom to appear in Friedreich’s ataxia is usually gait ataxia, or difficulty walking. The ataxia gradually worsens and slowly spreads to the arms and the trunk. There is often loss of sensation in the extremities, which may spread to other parts of the body. Other features include loss of tendon reflexes, especially in the knees and ankles. Most people with Friedreich’s ataxia develop scoliosis (a curving of the spine to one side), which often requires surgical intervention for treatment.
Dysarthria (slowness and slurring of speech) develops and can get progressively worse. Many individuals with later stages of Friedreich’s ataxia develop hearing and vision loss. Other symptoms that may occur include chest pain, shortness of breath and heart palpitations.
Most individuals with Friedreich’s ataxia tire very easily and find that they require more rest and take a longer time to recover from common illnesses such as colds and flu.
As with many degenerative diseases of the nervous system, there is currently no cure or effective treatment for Friedreich’s ataxia. However, many of the symptoms and accompanying complications can be treated to help individuals maintain optimal functioning as long as possible.
“It was a great shock when we found out, because we did not know what was wrong. We fall a lot and it is very difficult to climb stairs. It was also very difficult to do what other children, without any illness or disability, could do. Many children used to tease us,” said Chené and Annika.
The twins also started writing slower. They went to a doctor and after finding out what was wrong they moved to another school called Hope School in Westcliff, a school for physically disabled learners.
The two support each other in every way possible and they are not letting the illness stop them from living their lives to the fullest. Their sister Charisma Coertzen also looks after them and gives them all the support they need. “We will be taking part in the walk next year again. It was inspiring to see other people do it as well.
“Our illness is not as bad as what it looks. Never give up … because there is always hope and all people with or without disabilities need to know that. We look forward to the next walk and hope that many others will join in,” ended the twins.
