Ebbe needs help around the clock

But gets no assistance

But gets no assistance

Ebbe, who will soon be five years old, is the only one in Sweden and one of only about 50 people worldwide affected by a special chromosome aberration, called 2q24.3 microdeletion. A tiny part of one of the body’s 46 chromosomes is missing, but the effect is all the greater.

Ebbe suffers from epilepsy, developmental disorders and muscle weakness. He cannot talk, sit, stand or make conscious movements. The parents have to help Ebbe with everything.

Ebbe, soon to be 5, lacks a small portion of one of the body’s 46 chromosomes.
Anna Gärdehall tries to see the flashes of light in everyday life. She tells us that Ebbe loves the preschool and short-term accommodation he is on a few days a month.

- If the children dance and listen to music, then he sits in his chair in the middle and moves in his way and smiles. He thinks it’s great fun, says Anna.

Many hospital visits

Ebbe has many booked hospital visits and has often been admitted to the children’s clinic at Växjö laser. Then not only Ebbe, but also the sisters Elly, 9, and Svea, 3, will be well received:
- "What fun you come," the staff says to the sisters. They get pancakes and ice cream, someone says "come on we go and play". It is absolutely fantastic staff, says Anna.

When Aftonbladet visited the family two years ago, his son could not cry. He can today. Anna is glad he learned it.

- It has to do with maturity and development, she says.
"Probably the worst of it all"
At the same time, it is difficult for Ebbe to not explain why he is crying.
- It’s probably the worst of it all. Another five-year-old can say "I have an arm pain," Ebbe can’t.
Two years ago Ebbe couldn’t cry, he can now.

His everyday life is full of complications. Last year Ebbe received pneumonia, ear inflammation, eye inflammation, had intestinal bacteria, had to be home from pre-school for several months, had been hospitalized for several weeks, broke his left leg in three places because the skeleton had become fragile, among other things because he was moving so little.

- Did you know everything that would happen in the future, you probably would not be able to. It’s better not to know. We live in the present.

When Anna and partner Mats Norlander requested assistance, the Social Insurance Agency said no. The authority claimed that the parents only assist Ebbe eight hours and eight minutes a week in his "basic needs". The limit for the child to receive assistance is that it needs help with basic needs at least 20 hours a week.
"Don’t want luxury - just a everyday life that works"
Ebbe’s parents do not understand how Försäkringskassan has calculated. They help him eat, drink, dress, take care of his hygiene, keep things moving and move. Not to mention that he has to be turned at night (to get blood flow into the body), monitored around the clock (if he should have an epilepsy attack), massaged (to keep the muscles moving) and have the bed changed at night (when he has vomiting, wet nosebleeds or leaked from his peg - a button on his stomach through which he gets food and medicine).

- The Swedish Social Insurance Agency has its provisions. But that is not true for five cents with reality, says mother Anna.

The parents have already taken the next step, and requested assistance from the municipality of Växjö instead, so that they do not go into the wall.
- It’s not a luxury we want, just that everyday life should work, says Anna.
What do you do if the municipality says no?
- I don’t want to think that far. I am very positive about myself, thinking that most things are going well.
It is difficult for the surroundings to know how much Ebbe really understands what is going on around him. But that he is loved by the family cannot be missed:
- Both siblings are very caring. Lillsyrran said the other day that "he is my big brother and best friend", says Anna Gärdehall.

Source :Aftonbladet

But gets no assistance السابق

But gets no assistance

The government receives criticism for old IT systems التالي

The government receives criticism for old IT systems

شاركنا تعليقك