Sytske... Exceptionally Amazing

Sytske. ... Exceptionally Amazing

(by Noor, Sytske’s mother)

I will never forget the day I drove my sweet little nine year old daughter Sytske to the hospital, she was so sick and so vulnerable. The doubt, the fear and then the confirmation that she had Type 1 diabetes was a huge blow to us all.

Unfortunately Sytske was, from the beginning, a patient who had difficulty adjusting to diabetes. We are, however, incredibly proud of her, as she manages to cope with her diabetes despite all the setbacks and is always looking to the future. Even when she’s hospitalised she always tries to makes the most of it.

In the last 25 years there have been many hospital stays, often with serious complications. We were incredibly sad when 6 years ago Sytske became blind. The courageous, very dedicated doctors have always been very committed to treating Sytske and have always done everything they can to treat her as best as they could. We are very grateful to them.

Sytske always sets herself goals.

If her goals cannot be achieved as a result of her diabetes then she shows great resilience by adjusting her goals to what is possible. Sytske looks for and seeks opportunities and is always positive. As a result she is thriving in the middle of a loving relationship with her fantastic boyfriend Gert. She lives independently with the help of her sweet guide dog Prisca and the many dear friends and family around her. Sytske deeply inspires and brings us together.

'Love can only live there
Life is only good there
Where one quietly and casually
Does everything for one another. '
This is our family motto.

For Sytske and her fellow sufferers the implantable insulin pump is of vital necessity. We are incredibly grateful to Professor Bilo and his team for their years of limitless energy. I hope, I hope, I hope that the development of the new implantable insulin pumps can, as a result of all the donations, be continued soon.

Speed is of the essence. The uncertainty of the future, understandably, brings an element of nervousness. Thanks to the great commitment of the doctors, the volunteers of the Sytske Foundation and all the lovely people around us, we remain hopeful.

Together we can make it happen!

Love, Noor

Sytske …… Exceptionally Amazing

(by Carola Schothorst & Marquiette Schaap)

Sytske was 15 years old when she first came to babysit for us and became a big sister to our children. They are now grown-up and have left the house but they still remain very close to Sytske, as do we. From close quarters we have seen how Type 1 diabetes has affected her and how she has had to deal with the restrictions she has faced over the years. When she was approximately 18 years old she was hospitalised for half a year. It turned out that Sytske was intolerant of insulin and had to have her first internal pump fitted which gave her back some quality of life.

Sytske was very sporty! She skated and played hockey and tennis a lot. Due the pump in her stomach Sytske had to be careful with her movements. She ended up giving up these sports and moving on to the less-physically-taxing game of golf, in which, within a year, she also excelled. This too she had to quit when new complications arose. There followed some very difficult years where she spent much time in hospital. Despite a large number of eye operations her vision deteriorated further. Still she gave a positive spin to the experience and just before she turned blind graduated with honours from her first year photography course. Always looking on the positive side Sytske then remarked, 'Life probably has more beautiful new things in store!'

Sytske shares the highs and the lows with her parents Piet-Jan and Noor, her brother Maarten and sister Wendela. She has a large group of friends and a fan club of children. She met her boyfriend, Gert, in the rehabilitation centre and they have, for the last one and a half years, been living together with his children in Amsterdam and Maarssen. Several times a week she and Gert travel with their dogs between Amsterdam and Maarssen.

It is incredibly beautiful to see how Sytske deals with setbacks and gives a positive spin to everything! She enjoys with an intensity all the little things in life that mean a lot to her and in the relationships with people she loves.  Despite how limited her life may seem, she shows us and others around her how to make the most of life. She also shows us how much it is possible to give, how not to complain and how to make the most of your limitations. To look at what is available and be aware of how to enjoy it. That's what Sytske taught us, so young and already so wise.

That is why it is so obvious to us why we need to ensure that ‘the pump becomes a reality’. There is no other option. We fully support Sytske and are extremely happy and thankful for all the help being given to Sytske and her fellow sufferers!


Positively-spirited, enthusiastic Sytske

(By Gert ... boyfriend of Sytske)

Sytske and I got to know each other in a rehabilitation center. She had become blind due to her diabetes and myself as a result of a bacterial infection. We soon came to discover that we had become blind on exactly the same day. What a coincidence! Due to the fact that  we both went, within a few days from prefect sight to completely blind, we both had to learn lots of new skills. We learned to read with our fingers: braille. We learned to cook again, how to work with a talking computer and walk with a stick and guide dog. Despite the daily frustration of having to learn things that were previously granted, Sytske always remained full of enthousiasm and and with a  zest for life.

Typical of Sytske is that she is always warm and creates a sense of togetherness. I can still remember a particular incident when I wanted to play a piece on an old piano that stood in a busy dining room. I lifted the piano cover and sat down. Unfortunately, the stool wasn’t in the middle and with a huge clatter it fell and I was left lying on the ground. Before I even had the time to feel embarrassed Sytske was on the ground lying next to me. It all happened within a split second and without thinking!

Discovering that that someone would do that for another was really very special! We were real buddys!

After the rehabilitation period I went back to my family. I was still married but unfortunately  my marriage was not in a good state and after the divorce I looked Sytske up. It was great! 2 years had gone by but it still all felt so familiar. I had my buddy back. We have now been together for one and a half years and it the relationship remains close and warm. We surround ourselves with the warmth and love of family and friends. Sytske has a house in Amsterdam and I live in Maarssen. As I am sharing parental custody of our children my two daughters, Sytske and myself spend half a week in Maarssen and the other days without my children in Amsterdam.

Since Sytske came to live with us has changed from a fairly empty decorated interior into a warm and cozy home. This home and the organiser that Sytske is has led to many memorable moments together with my daughters. A good thing for all of us. We both have guide dogs and we go out often together - to the beach, strolling through Amsterdam and weekends away.

I knew about Sytske’s internal insulin pump and that she was life-dependent upon it. The pump was not an issue regarding our future plans. The thing was just there and did its job.

One day we received a letter from the hospital stating that the manufacturer of the current implantable insulin pump was going to stop production. Always accustomed, since childhood,  to setbacks this was for Sytske a step too far and she took the news very hard.

Used to always spotting and adapting to new opportunities she could no longer figure out to overcome this latest obstacle. I too was touched by this terrible news.

Our plans for the future suddenly seemed impossible. We no longer dared to dream beyond the time frame that her pump’s battery would last and that may be a week or a year. No one can say. Sytske has an indestructible optimism and she soon believed that the situation would eventually work out. She tried not to let it get to her and continued with her zest for life. From a personal standpoint, I had some doubts.

And ...

There turned out to be light at the end of the tunnel! A Dutch company had started developing a new internal pump. Their development had already progressed far but money was urgently required to complete it. This pump could save Sytske along with her many fellow sufferers.

How grateful we are for the people around Sytske who jumped in to help her. They are doing everything they can to raise the money for this new pump. They have founded the Sytske Foundation and are encouraging others to take action again or make a donation. Fantastic! As a result Sytske and I can dare to dream again!