- By: Coligny De Villiers Nel
- Short URL: https://www.backabuddy.co.za/villiers
Villiers Nel was born on 9 March 2007 in Stellenbosch South Africa.
He was diagnosed as having a defective gene in April 2008 by Prof. Grietjie de Jongh of the Medical faculty of the University of Stellenbosch. Receiving a diagnosis of Cornelia de Lange Syndrome can be overwhelming. A lifelong process of challenging and re-challenging feelings, thoughts, actions begin. The probability of that happening to a baby is the same odds as winning the national lottery. In short - Villiers needs a lot of help in this life. His immune system is very vulnerable an his medical cost is extremely high. He also needs special attention to develop to the best he ever can be. We do not know how far he is going to go in life. As an indication, at 2 months his sister was capable of more than him at 2 years. He needs help. This is almost an understatement.
Long term financial planning needs to be done as he probably wont be able to care for himself. In the short term he needs expensive therapy. His medical bills up till now was extremely high. The last 2 years was especially harrowing after we tried to put him in a home for children like him during the day. At least 2 times we know of, they had him fall on his head on a tile floor from a nappy exchange table at a height of 1.4m. He developed epilepsy and lost his ability to crawl. He also became very susceptible to lung infections. He is fed through a peg and is under a strict medical routine. Although he is given physiotherapy twice a day, he needs more specialized therapy, as well as some expensive equipment.
We have a personal caretaker, as he is severely handicapped, who has to be paid at least R4000 per month. Our caretaker is extremely capable and is with him all the time during the day.
I have only a small state salary covering the food and some other items, but it comes with a good medical aid benefits (costing me R4000 per month). I therefore have a deficit of R8000 per month in order to take proper care of him and my family. (I have two healthy kids to care for too.)
No family can take care of such a child alone. I cannot do it without your help.
*The campaign creator has opted that Backabuddy transfer any funds raised directly to the relevant organisation*
Cornelia de Lange Syndrome Campaign