Otto wants to come upstairs...

... and he needs a lift to do this, because a serious illness has left him unable to walk. This is a problem for us, unfortunately, and we hope you can help us solve it. Back to the beginning: This is the story of Otto, our four-year-old son.

The little boy

The little boy

Otto was a healthy boy – curious, full of life, and happy. He was everywhere at once, first conquering our garden, then the woods nearby. With a sibling on the way, he was really looking forward to becoming a big brother.

Suddenly, everything changed

Suddenly, everything changed

On his second birthday, in December 2016, Otto became ill. It was actually a rudimentary virus that usually affects the respiratory tract. But Otto didn’t catch a cold – instead, the virus found its way to his brain, causing an inflammation there. He was taken to hospital immediately. On the first day he was able to unpack some of his birthday presents.

Encephalitis

Encephalitis

However, encephalitis is a very serious illness and Otto’s condition worsened from day to day. After a week in intensive care, the doctors had to remove a large piece of his cranial bone in order to reduce the pressure on his brain caused by the swelling. Otto then spent more than five weeks in an artificial coma.

The nightmare of our lives

The nightmare of our lives

Our world fell apart. We moved into the intensive care unit at the Berliner Charité and spent weeks at Otto’s side day and night without there being any significant improvement. Meanwhile, Mum was in her sixth month of pregnancy and wasn’t quite so able to take all the strain. Fortunately, all was going well with Otto’s little brother.

The struggle to recover

The struggle to recover

When it was finally possible to replace Otto’s cranial bone, it was difficult for him to regain consciousness and he couldn’t breathe sufficiently well without assistance. A tracheotomy was performed and he required artificial respiration by means of a tracheal cannula.
He was also administered very strong replacement medications against the withdrawal symptoms from the hard coma medications. In spite of this, it was possible to move Otto to a rehabilitation clinic.
Although the doctors and care staff at the Charité had given us wonderful support, we were glad that the intensive care period was over for now. This was on 8 February, 2017, around seven weeks after the onset of the illness.

In rehab

In rehab

Otto was moved to Brandenburg an der Havel for his rehab. This time only Dad moved in with him because Mum’s pregnancy was very advanced by now and the conditions in the clinic were not particularly comfortable for her. But she came to visit almost every day, as did Grandma.
Dad’s employer was extremely supportive throughout this long period in which he was unable to work, and also afterwards. .

Getting off the medications

Getting off the medications

In the beginning, Otto wasn’t able to do very much in rehab as he was still too dazed from the strong withdrawal medications. These had to be tapered off gradually, a process that was very physically demanding for Otto. His sleeping behaviour was severely disrupted, with periods in which he slept no more than 30-60 minutes at a time.
Dad had to have a lie down during the day when Mum and Grandma were able to be at Otto’s side.

Back up for air

Back up for air

At the same time, it was possible to wean Otto off the artificial respiration – one less beeping machine.
However, because he had problems swallowing, the cannula in his throat had to stay. Breathing through this tube was terrible because Otto reacted very sensitively and kept trying to cough or gag it out. We had to siphon the secretion from this tube continuously.
The doctors gave us little hope and predicted that Otto would remain in a vegetative state.

Training Otto’s awareness

Training Otto’s awareness

Tests showed that due to the damage to his brain, Otto had hardly any awareness of or control over his body. Relatively quickly he was able to support his head again, but speech, coordination of his arms and legs, holding his torso upright – all of this was gone.
Therefore, the therapies were designed to strengthen his awareness of his own body and his environment again, and to keep his body mobile. When a person has been lying for so long, they develop incorrect behaviours that are difficult to remedy.

Return to the Charité – removal of the cannula

Return to the Charité – removal of the cannula

Eating remained difficult for Otto and it became necessary to insert a gastric tube directly through the stomach wall. We were happy that this procedure was being performed in the Berliner Charité once again.
During Otto’s stay, our favourite doctor tried to get him to breathe without a cannula through his nose and mouth again. In Brandenburg nobody believed that he wouldn’t choke on his saliva, and nobody wanted to try. But Otto managed to activate his trachea and oesophagus correctly, and we were able to do without the cannula. Medically a big step forward, and in practical terms a new sense of freedom without any suction devices.

Hello, Rudi’s here!

Hello, Rudi’s here!

We took advantage of Otto’s trip to the Charité to welcome Rudi into the world. Dad was able to experience the birth and be there for both boys. Sadly, Otto wasn’t really aware of the fact that he was now a big brother.
Of course, the pregnancy was a major burden to carry when being there for Otto during his serious illness and rehab. But today Rudi, full of joy and always good for a surprise, is one of our greatest comforts in what continues to be a difficult situation. And Rudi has also enriched Otto’s life so much in the meantime.

The first smile

The first smile

After the cannula was removed, Otto was suddenly much more interested in the people and things around him. In May 2017, during his first cautious attempts to eat some ice cream, his smile finally shone through again. An indescribable feeling for the whole family. For a long time, we weren’t sure if we would ever see him laugh again.

Otto on the move

Otto on the move

Otto was also more interested in his therapies after the cannula was removed. Whether on machines, on the physio bench, to music or in the water – he was much better at dealing with the different situations and therapists.
And his will to participate was more and more obvious, but also the severity of his physical impairments.

Welcome home

Welcome home

Although it was important to us for the therapy in the rehab clinic to continue – Otto was just getting going – he had to finish his stay there at the end of June, 2017. Our health insurer would not cover the costs any longer and it wasn’t possible for us to cover them privately.
Looking back, however, having spent half a year in clinics it was good for us all to be together again under the same roof and continue helping Otto to get better.

The tube is removed

The tube is removed

Our first major goal was the changeover from artificial feeding via the gastric tube to real food, so that the tube could be removed as soon as possible. Otto had always been a good eater who loved his food. Luckily, we were already able to do this by the end of July after having spent most of every day trying to tempt him with semolina pudding and other favourites. Here too, Otto overcame this obstacle much quicker than all the experts had predicted.

Back to day care

Back to day care

Right after we came home it was very important for us to apply for a day care assistant who would accompany Otto to his old day care centre every day. This was approved pretty quickly, and since September, 2017, Otto has been going to day care again. Ines, Otto’s long-term carer, has been fantastic. They make a great team and Ines has become an extremely committed and loving friend of the whole family.
The lively environment and all of the other children have been really good for Otto. And he’s really happy about Rudi, who has also joined his group.

Practice, practice, practice

Practice, practice, practice

Otto also needs all the support he can get at home in order to regain the full use of his body. For example, along with the standard physiotherapy and speech therapy, Otto regularly goes swimming and riding to improve his body awareness. We have tried many alternative therapies, e.g. from the field of osteopathy, where Otto has displayed his openness by participating actively. Unfortunately, we have to cover these very expensive courses by ourselves as they are not included in the medical insurance plan.

A big, strapping lad

A big, strapping lad

Otto is now four years old, and with his healthy appetite, the little boy with the wispy hair from before the illness is now a pretty tall chap. He’s now significantly heavier, and with his reduced body tension he’s not so easy to carry around.
Because the bedrooms and the children’s room are on the ground floor of our house, with the kitchen and living room on the second floor, Otto’s weight is becoming more and more of a problem. We have no choice but to install a lift at this point to avoid completely ruining our backs, and so that Otto will hopefully at some time be able to move about the house by himself.

The long road ahead of us

The long road ahead of us

Otto is a little fighter who’s training hard for the day when he’ll hopefully be able to go through life on his own two feet. He’s always really motivated in his therapies, and like us he’s happy about every little success. He loves standing up like others his own age and takes little steps now and then in his walker. There are no prognoses, only hope.

The Plan

We moved into our house four years ago when Otto was one month old, and we can’t imagine a lovelier place for children.
However, retrofitting an existing house for Otto’s needs is a big undertaking, especially as it was built in the 1930s and, for example, the bathrooms are much smaller than those designed today.
Our house is old and meandering, with the rooms spread out over three floors. A lift is required to provide a barrier-free connection between the living room and kitchen on the second floor and the bedrooms on the ground floor. But it’s not possible to integrate this into the house. So we’re planning an extension that can house the lift and also create practical space for Otto’s equipment and enable the bathroom to be extended.
We don’t know yet how much all of this is going to cost. The lift alone will cost more than €30,000, with expected overall costs of more than €100,000 with the extension. This is a lot of money for us, as we have only just begun repaying our mortgage.

Financial aid

Of course, we are also endeavouring to get aid from public authorities for the financing. For example, under certain conditions the KfW banking group subsidises building projects such as ours with up to €5,000 if no aid from elsewhere is forthcoming.
Landesbank Brandenburg provides aid for lifts in existing properties to the tune of up to €12,000, but only if the rest of the house is also barrier-free as per DIN. Because our house is old, this is hardly feasible, at least not without renovations and extensions whose cost would exceed the aid offered.
Our health insurer also offers the prospect of financial aid. However, if granted, the subsidy would amount to a mere €4,000 – a valuable contribution but only a start in view of the overall costs.

How to Help

As you see, the necessary renovation is not so easy for a young family to finance, with Dad only working part-time and Mum not at all for the present, due to all of the organisation required from day to day.
Any support, no matter how much, will be of help to us. Perhaps your friends or an employer would like to help. Please share our request wherever you think it may do good.
Our lives will probably never be normal again, with many things being out of the question for us for now. But if we manage at least to make many things easier at home, we will be very, very grateful to you. The idea of not being able to stay in our home and get through each day with Otto is unbearable for us.

The Stars for Kids e.V. association kindly provided us with a donations account in order to collect funds for our project. This enables you to get a receipt for your donation, which you can submit for tax purposes (international use to be verified).
Please use the following bank details if you are able to help:

IBAN DE94 1805 0000 3000 0053 30
Very important: Note to payee “Otto”

Facebook

Donating via Facebook is simple by going to Otto's fundraising page

PayPal

You can also use the following PayPal-link to support Otto - please remember to enter the note to payee “Otto” in the text field before payment confirmation (replacing “Thank you for your donation! / Wir danken für Ihre Spende!”) so that Stars for Kids know who the donation is for.

Thank you so much for your support!
Otto, Rudi, Julia and Niklas

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Julia Giacomelli and Niklas Ploog are responsible for this website and its content.

Postal address: Grüner Weg 1, 14552 Michendorf, Germany
Email: hallo@ottowillnachoben.de
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