Zakk sunflower

My son has a life limiting condition called neurofibromatosis type 1 this this condition causes tumours along the nerves on the inside and outside of the body. some of which are cancerous . Zakk has a cancerous tumour in his eye which cannot be cured it just has to be controlled with chemotherapy on and off throughout his life. it also carries with it learning difficulties which  Zakk suffers enormously with he has sleep epilepsy deformed skull and ribs hypermobility in  all of his joints which makes him fall a lot and not be able to walk very far because of immense pain.  he also has three brain tumours one of which is on the cerebellar which controls your distance judgement and balance and unfortunately has had to go through two years of chemotherapy which made him seriously poorly. He used to have a feeding tube but now he drinks his prescribed fortini milk as he eats next to nothing so the feeding tube will always be an option. zakk also so doesn't sleep at home he is up every couple of hours.  Unfortunately his condition throughout his life will only get worse. zakk is a full time job and it mentally challenges us everyday because of the unknown in zakks life. He currently goes to to a respite called sunflower house which gives us a much needed rest from the enormous care needs that Zakk has. My eldest son has been growing his hair for a very long time and he has decided he wants to to have it all cut off off to raise money for sunflower house. Alex is very brave and I am enormously proud of him for doing this for such a lovely place. Alex himself has asperger syndrome odd ADHD and and autism so this is a big thing for Alex. Sunflower house gives zakk the opportunity to meet new people and to do many great things. they go on days out,and get to go to how many fantastic places that Zakk wouldn't necessarily have the opportunity to do without sunflower house. The people who work there are wonderful they provide care not only for zakk but for many disabled children and their families.They provide help for many families who otherwise wouldn't have any help at all.