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(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.

Life weaves dreams for us all, regardless of who we are or where we start.

Jannie's dreams were simple yet profound: to be a devoted husband, a caring parent, a soaring pilot, an ace golfer, a successful businessman, relishing every moment of his life.

But life, as we have learnt, doesn't always follow our plans. Fate took us in a different direction when Jannie was diagnosed with Huntington's Disease.

Our world shifted, forcing us to learn, adapt, and accept the harsh reality.

Huntington's Disease—a silent predator that steals life in stages—is a burden most can't comprehend. It's an unwelcome visitor that never leaves your doorstep, bringing challenges that test the strongest of spirits.

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.

We've learned patience, supported one another, and cherished the fleeting moments while Jannie can still be himself. But the disease, unyielding in its progression, has now stolen his ability to walk, talk, or care for himself. It's a cruel, unrelenting fate that holds him captive in a failing body.

Jannie wife is truly amazing and offers great emotional strength and despite holding down a taxing full-time job, does so much to sustain and physically care for Jannie, her husband.

Our mother, now 76, is a pillar of strength, caring for Jannie on a daily basis whilst his wife attends her day-job.

Imagine lifting, dressing, and tending to a drastically weakened adult man without rest — it takes a huge surrender and commitment from any person. The truth is that the toll is immense on everyone caring for Jannie - both emotionally, physically and of course financially - especially as the family business struggles to sustain these demands, post-lockdowns.

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 cared for.

Jannie is also now 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.

Jannie 2

UPDATED POST:  (December 2023) 

Jannie deteriorating condition now dictates that he requires professional day to day care that surpasses what his family can readily provide, despite their committed efforts. The reality is harsh—many families face these struggles without adequate resources.  Jannie's current family member day-carers are just not able to physically manage, without proper help.

It's a reality that birthed The Jannie Project Foundation, it was born out of desperation and an unseen need that the majority of people will never even know about.

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.

You may wish to review the various ways the Foundation raises funds - all are open for your contribution and donation or sponsorship.

Contact us to discuss how your support helps these people in need.

 

Your support means the world to us, extending beyond our family to others enduring similar trials.  Join us in making a difference through The Jannie Project Foundation, where every contribution counts toward alleviating the silent suffering of those battling Huntington's Disease.  Thank you for considering and being part of this heartfelt cause. THANK YOU.

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