One out of 1.000.000 people suffers from pontocerebellar Hypoplasia Type 2 (PCH). PCH is a rare neurodegenerative disorder. Children with this congenital disease are severely disabled, need a high level of care and only 50% of the children survive to see their 10th birthday. Due to PCH being considered a rare disease the amount of research for a cure and/or treatment has been limited.
In the last 10 years, a better understanding of the manifold problems of PCH has been reached together with physicians, researchers and other specialists based on our parent initiative. With this knowledge, parents with newly diagnosed children have now a much better starting point and are able to benefit from the gathered knowledge.
There are family meet-ups every other year together with international experts in one of the German children's hospice. Unfortunately, due to limited spaces and nursing capacities, only a fraction of families could attend these meetings.
With our next PCH2 meeting in August 2020 we want to raise awareness for the situation of families with severely disabled children with an often limited life expectancy.
We want to show how important family support groups and the collaboration and exchange between parents and physicians/clinicians are.
We would like to prove and show that life is not over, but it will be different and more intense than planned. Good quality of life is an achievable goal for all family members.
That's why we're planning our "Cruise4Life - Intense and inclusive special moments on the Baltic Sea"
On the 21st of April 2006 we started as a small E-Mail group of German parents, which we swapped to a web-based forum in October 2007. Every year new families join and the exchange is every expanding. So far over 50 families with children affected by PCH 2 have contacted us.
We offer exchange, advise and practical help für all families with PCH children. This includes everything from individual contacts through in-person meetings, via telephone, messenger or Emails, exchange via forum threads on specific topics as well as big family meet-ups every other year. For the bigger meet-ups international experts are invited to join us in our quest for better quality of life for our children.
We believe that even if children who are severely handicapped in multiple ways can participate in every aspect of life and that their families are an important part of society. With a diagnosis like PCH, life is not over, but it will be different and more intense than planned. We and other affected families will not hide. These children want experiences and be part of a "normal" life.
Years of intensive care for PCH children need a lot of support and help from many sides. Often these are the grandparents or other relatives, friends, nurses, teachers or doctors. Each family should be able to invite 2 people to this cruise, in order to say "thank you" to people that helped them
Based on our expert meetings and scientific work in the last 10 years, there are now tangible efforts in Germany to develop therapies for PCH children. Our goal is to improve the quality of life for children living with this disease, but most of all to find a cure for PCH until 2025! We are intensely supporting this research and collaborate closely with the scientists.
Axel L. - Father of Felix and Jonas
" We are consciously using "lighthouse moments" to deal with this devastating diagnosis for our children. Lighthouse moments are special and wonderful moments with our children which we cherish and absorb. This positive energy carries us over the difficult and often exhausting times. My wish is, that our Cruise4Life will provide lots of such lighthouse moments for the participating families.
Nellie S. - Mother of Linn
The first contact with another mum of a PCH2 child was groundbreaking for me. Lots of if`s and maybe`s regarding our assumptions were confirmed, reinforced and much clearer. by this, we learned to stand up and made ourselves heard so that we would get the support for our child that was needed. Your help will enable other families to also benefit from this support as well as the gained expert knowledge.
Marco H. - Father of Emma
Even though PCH2 is such a rare disease, we found the experts from north, south, east and west. These are physicians, scientists and parents, caregivers, therapists or teachers. Together we`ve build and are building a "navigation system", set the compass and found pilots to navigate the shallow waters, maelstroms and difficult waters.
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