COENRAD, OUR UNIQUE MIRACLE – GOAL R 100 000
Our unique little warrior boy, Coenrad (now 1 year old), was born with a very rare chromosomal disorder named Pallister-Killian Mosaic Syndrome (PKS). There are only approximately 500 identified cases worldwide.
PKS is a developmental disorder that affects many parts of the body, including the brain. This condition is characterized by, amongst others, extremely weak muscle tone (hypotonia) in infancy and early childhood, intellectual disability, distinctive facial features and sparse hair.
Most babies with PKS are also born with significant hypotonia, which can cause difficulty breathing and problems with feeding.
PKS is not inherited. It is caused by the presence of an abnormal extra chromosome called an isochromosome 12p or i(12p).
The chromosomal change responsible for the disorder typically occurs as a random event during the formation of reproductive cells (eggs or sperm). Affected individuals have no history of the disorder in their families.
Our little baby Coenrad has severe developmental delays. He is over a year old and is still struggling daily to sit up straight, roll over or crawl.
We did extensive research and discovered an organisation named The Family Hope Center! The Family Hope Center together with the South African based Brain Child Fund, has dedicated years to helping over 18 000 special needs families to address the root of their children’s neurodevelopmental disorders.
We are still doing daily conventional therapy with Coenrad, but we know that the Family Hope Center’s approach is the road to victory we have been hoping and praying for.
We believe that their practical approach to healing the damaged part of Coenrad’s brain will ultimately ensure that Coenrad will develop to his full potential. They teach you to do these exercises in the comfort of your own home.
The Family Hope Center arranged a conference in February 2020, which we are sure will result in many people with special needs children obtaining hope and tools for the road ahead!
We thank you for taking the time to get to know Coenrad better.
FIND, LIKE AND FOLLOW US ON SOCIAL MEDIA