Magnus is 16 years old and goes to public school in Denmark. He is living in a large family of 7 people (2 adults and 5 children).
He has struggled all his life with a rare and aggressive genetic bone disorder called Idiopathic Carpal Tarsal Osteolysis (ICTO). There is only around 26 persons in the world suffering from ICTO. In Denmark Magnus is the only one. We have knowledge of only 2 persons who has the precise same subtype of ICTO as Magnus. The disease belongs to the Osteolyse-family and destroy all joints in his hands, arms, shoulder, feet, legs and hips. He faces several optopaetric operations like new hips and movement supportive operations. He received a new hip in summer 2016.
Magnus has as a result of joint destruction great pain, which he daily receives strong medicine for.
The disease does furthermore have a vital impact on kidneys and ends with renal breakdown. Magnus received his first kidney in 2007.
On top of all his troubles he also has Scoliosis and has had several operations for this disease. Today he has permanent steel pipes in his backbone.
Magnus is a permanent user of electric wheelchair and needs help to every daily life chores like eating, toiletvisits, writing, dressing/undressing etc
He is very dependent on help from other people and from expensive medicine.
The diseace is unpredictable. Some patients dies as a child or as a teenager. Other patients dies below 30 years. It is however well known that his life will be a lot worse in future.
He will be much more troubled both regarding disabled and regarding his transplated kidney.
It is very hard as a parent to be aware of one's child has so much pain and to go through so many surgeries and hospitalizations. We are very worried about the future and just want to give him as good a life as possible with lots of love and good experiences.We hope you will support with financial contribution and give us the best opportunities to give Magnus as good and happy life as possibly.
Thank you so much for every support and understanding.