Jannie's Story | A Legacy Charity

Your Support Goes a Long Way

Help us support families preserve their dignity – make a donation

Our motivation

(Note: Surnames and Location have not been included in order to ensure that Jannie's dignity is maintained – Updates about Jannie’s Health will be published and made available from time to time). This post has been written by Jannie’s brother, Nico.

We all have dreams and goals in life, regardless of who we are or where we come from. Jannie's dream was to be a husband, parent, pilot, fantastic golfer, businessman, and to enjoy his life.

This is the kind of life that anyone would want and be willing to work hard to achieve.

Life though, does not always function according to time and schedule and we are all occasionally compelled to change direction, as well as our goalposts and dreams.

For us, everything would change when Jannie was diagnosed with Huntington's Disease. As a family, we had to learn, to research, and come to terms with what was happening. We've learned through the years to be patient, to encourage one another, and to ensure that Jannie gets the opportunities to be who he is and to do what he can, whilst it's still possible.

Most people don't comprehend the varying degenerative stages of Huntington's disease, and they don't always grasp the immense difficulties families face when coping with a loved one in these circumstances. It hits home, it's on your doorstep every day, and it can be most challenging.

One must confront the reality of this condition, deal with your thoughts and feelings, as well as pull “yourself up”, and stay cheerful and supportive when you can. You learnt to look on the bright side of life and cherish each valuable moment in order to keep going no matter how difficult it is to do so. Believe it though: There is nothing you can do but hope, pray, and trust it will get better.

Currently (as of December 2022), Jannie's health is rapidly deteriorating, and his condition is atypical of how the disease is also known as: "The Slow Merciless Death". He is unable to walk and requires bed rest much of the time, and he needs to be hand-fed, washed, and taken to the bathroom, cleaned and to spend time with the family. Jannie, right now is also virtually unable to speak. The truth is that he is locked inside his deteriorating body – which is really just a fast disintegrating physical and mental system.

Presently our mother, at 74 years of age, is the one who handles the day-today care requirement. Imagine having to lift, look after, dress and clean your adult child day in and day out…. She is an absolute hero! After 2 years of lockdown and shifts in the world dynamic, the family’s business has not been able to financially support the situation and requirement, with Jannie having been an integral part of that business before the deterioration took over.

Soon, Jannie will require a professional care-giver who can assist with the demands of the time - our mother will just not be able to physically do it. Other families are dealing with the same challenges. With very few resources available, how does any family cope?

Some people, afflicted with Huntington’s Disease, also do not have any parents of family to take care of them. This is how The Jannie Project Foundation came into being – out of this desperate need that very few people even know exists.

Thank you for considering your support to the Foundation. It means everything to our family and then onwards to others too. You can read about the various ways the Foundation raises funds on the relevant section of this website. THANK YOU.