– I just want as normal a life as possible, and to be able to meet friends when I want, says Tea Valle. When she was three years old, the doctors realized that something was wrong. The parents say they thought she was lazy. She wasn’t. The very rare muscle disease Limb Girdle was breaking down her muscles. Fiber for fiber. There is no exact figure for how many people have the disease in Norway. But Norwegian Health estimates somewhere between 200 and 500 people. Tea gets help to get on the stair lift to the second floor. Espen Bierud – Completely exhausted When she was nine years old, she stopped walking. The muscles couldn’t take it anymore. She needed more and more help with everyday life. Parents Tom Henry and Tonje were completely in the basement when they finally asked for help just over two years ago. – We were completely exhausted. The municipal people saw it at the time and we received 35 hours of help per week. The doctors have told the parents that Tea will probably live a long life. But she probably won’t get better. Probably the opposite. Tea takes courage when news’s microphone approaches. – I don’t want to go to bed at half past nine. I need help and feel sorry for mum and dad who don’t get the help they need. Tea on the way home from school. Photo: Espen Bierud / news The municipality only responds to SMS A few months ago, the family applied for 80 hours of help a week. The municipality refused. 46 hours was enough. – It hurts and it takes a toll on us. It has really been a hard six months, says dad Tom Henry. news has asked for an explanation from the management in Gjerstad municipality, but only received an SMS which says: The family recently appealed the refusal to the State Administrator, and was upheld. It was Aust-Agder Blad who first wrote about the case. The newspaper refers to the documents from the State Administrator, which are very clear: “In our opinion, an adequate assessment of the child’s best interests has not been carried out, compare the second paragraph of Section 104 of the Constitution and Article 3 of the UN Convention on the Rights of the Child”. Tea’s mum, Tonje Valle, is blank-eyed when she is asked how she experiences the situation. – This is important so that Tea can have a dignified life, that she has the freedom to live and to be young on the same level as everyone else. The exercise machine is being prepared. Training The 13-year-old needs help with most practical tasks. And she has to exercise a lot to keep the disease at bay. At least one hour every day on the walking machine. Today it is Rine who helps. She’s only been Tea’s assistant for a week, so she needs help from dad. After lifting, rigging, attaching safety belts and pressing various buttons, the walking machine starts. The toning machine helps Tea to keep her muscles alive. Exhausted parents – It’s just not working out the way it is now. During holidays and weekends we have to largely fend for ourselves, says mum Tonje. – Little brother has looked after Tea far too many times when we have to go to work. Both she and her brother are then entitled to a normal life, . She has already worked a reduced position for many years to get the schedule up. – There is no medicine or cure for this disease. We have to live with this. Now I hope the municipality comes to their senses and can send us into Christmas with a positive message, says father Tom Henry. After training, it’s homework time. Tea gets help from the assistant while dad cooks dinner. Homework time with the assistant. Photo: Espen Bierud / news
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