Since the very start MaxMilan's life was special and always will be. He has the Prader Willi Syndrom. Today no cure is available. But as we learned more about PWS, we also learned that there is a beautiful community of parents and researchers that have dedicated their lives to eliminating the challenges of PWS.
We are so grateful for al the doctors that help us along the way. Especially dr Miller from the Florida University is MM's absolute SUPERHERO. Together with other researchers from all over the world, she is determined to find solutions to eliminate the challenges of Prader Willi Syndrom.
The diagnosis often come early in their life, which is a positive evolution. This way, we can start to support these kids as soon as possible with different kinds of therapies and medication.
Off course a diet is also crucial to their well being. No sugar, no cookies, no sodas, no chips, just a healthy diet at all times.
One small step, that is how we tackle a giant. Every day money is being raised all over the world. The One Small Steps walks raise funds for the research. In the past, several ground breaking researches have been funded by these walks. The future for PWS kids is changing. We can honestly says that the future for new born PWS kids will be easier.
But we haven't stopped their hunger yet. But we are close. Every small step helps and maybe your support, no matter how small of big, is the step that allows us to completely change their future. So donate now.
So often we meet other families and we understand the devistation of the diagnosis.
We know that there are a lot of struggles. It's hard, there are a lot of things to cope with.
And it will never end.
But don't forget that it is also an adventure with downs and extremely beautifull ups.
We are all try so hard to make the best of the situation,
that we often forget what joys and enriching lessons these children bring to our lives.
Your heart will be broken a million times, but will also explode with love and pride about 10 million times. So never forget to cherish & enjoy all those good moments.
Today we are focussing on stopping their hunger, so that they can live an independent life. But more is possible.
Nicky herself often attends psychology conferences to learn more about reducing the stress and anxiety caused by this hunger. Research changes and improves their situation, so it is very important to continue.
But these days, we are also seeing the first results of what gene therapy could mean for PWS kids. The results are promising, but further research needs to be conducted to explore the possibilities of gene therapy for PWS and most likely other diseases.
We have good hope for a better tomorrow.
Prader Willi Syndrom is a genetical disorder that occurs in 1/ 15000 children.
As babies, these children have a hard time to thrive.
Crying, eating, moving, ... everything is a struggle, because of their low muscle tone.
Once the hit the age of 8, the world is taken hostage by hyperfagia.
Day and night, they are hungry, and no, they can not control it.
It leads them to steal food and overeat till the point that there stomach explodes.
This constant hunger causes a lot of worries and stress and
prevents them from focussing on anything else.
Their hunger is a terrorist in their life and stops them from living an independent life.
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