Live as if it’s your last day...
People who know they have CAA live with a ticking time bomb. As a result, they live intensely. What makes them happy, what do they want to avoid? Actually, everyone should regularly be on their toes, so that you get everything out of life. Live as if it’s your last day.
CAA is a brain disease that causes recurring haemorrhages and infarctions. This leads to paralysis, dementia and death. People die immediately or they deteriorate with each new haemorrhage and die. They live with a ticking time bomb.
The disease is incurable, but it need not be. There is a solution. One that we want to find quickly since the enormity has become increasingly clear: 1 in 4 people over 60 get CAA. Unnecessary personal suffering that could be prevented.
People with the hereditary variant are the key to the solution. This group has the sad certainty of getting the disease at a young age. Because they can be examined before the onset of the disease, a cause can be discovered. A solution for them is a solution for everyone with CAA.
There is not enough money for research on this group. This is why the CAA Foundation was established, to remove this unnecessary ticking time bomb from many lives.
For me, today is not just another day. Today is exactly two years since you decided to go … along with the angels and yet I’m not sad today.
I open my heart to all that is today dad, and let it flow through me.
With love I think back to you … Thankful for our time together, grateful for all the things you’ve taught me and what we were arguing about. Grateful that you were my dad … And yes, I miss you, I miss you hugely sometimes and then feel lost and alone … But what strengthens me are your words after-echoing in my head: ‘I never give up ‘ …
The disease has put you through a violent struggle but it has finally caught up with you … My god, what have you fought. Fear, sadness, frustration … for losing your sense of reality, you physical ability, and ultimately your life … Personally, I’m glad your suffering has ended. The last period was so heavy and hurt me … I could see how – before the angels took you – you smiled at me for one last time, that mom was holding your hand, and you gave her one last kiss before you disappeared … Wonderful, it moves me every time …
On the other hand, your death has made me combative … This force has strengthened me to stand against this disease, “your” disease … What ultimately may also be my illness or my dear sisters or brother. … Only I’m not afraid of it. I believe that not everyone is going to die of the same disease, and that I could die of something completely different … And should it hit me, I believe you can heal yourself with positive thinking… “the mind is everything , what you think you become “.
I try as much as possible to live consciously in the here and now and to have no fear for things that have been, or that have still to come. Now, not later, is the essence of my existence. Today is tomorrow’s yesterday. The past has no future, and the future has no past. Only in the here and now, life has all the qualities of being.
The idea that change can only come through action explains my position within the Association and the Foundation. It cannot but put a smile on your face up there … because we have come a long way. 2 years after your death. The grand opening of the Foundation even took place on your birthday … It simply had to be that way.
Recently I had the privilege to be present in London at the 4th Congress and it has warmed my heart. There was this special energy and lots of beautiful people who all share the same goal; try to unravel and solve the issues surrounding CAA. Soon there will be a first funding from the Foundation to research with a clear potential to combat this disease. Based on this data, I promise you one thing, Dad, in about 10 years, I will write you again. Only then I will write: “It worked !!” … We have found the solution … We did because we have never given up!
Forever in my heart:
Teun de Vreugd 22-03-1952 – 28-09-2012 †
Jolanda Deputy Secretary Dutch CAA Foundation
We receive many questions from people that do not know what to do in their situation. And questions from people who want to contribute, but do not know what they can do. Those questions are important to us, because they help us. The battle we are fighting against CAA is not just our battle, but the battle over veryone who feels a calling to fight it alongside us.
Please ask us your questions. You can email us on: firstname.lastname@example.org