The three older brothers often have to back off

Complementary foods should begin in the fifth month at the earliest", emphasizes Marita Völker-Albert, spokeswoman for "Federal Center for Health Education". Even if the mother suffers from allergies, her milk contains substances that are important for the immune system. "If breastfeeding is not possible, special, low-allergenic infant formula is also suitable." Contact with cigarette smoke and cats, rabbits and guinea pigs should also be avoided. The best way to counteract dust mites as allergy triggers is through increased cleanliness and by not using carpets, according to the health expert.

Sun protection is particularly important for sensitive children’s skin. Therefore parents should give their children the "Shadow rule" teach: It says that children should not play in the sun as long as the shadow is smaller than their body. We give parents sun protection tips that take into account the latest scientific findings.

The risk of sunburn can be significantly reduced if the blazing midday sun is avoided, explains Professor Peter Höger, pediatric dermatologist at the Wilhelmstift Catholic Children’s Hospital in Hamburg. More than 80 percent of daily UV radiation occurs between 11 a.m. and 4 p.m.

In the sun only from three years

In general, dermatologists advise that babies and toddlers up to two years of age should not be exposed to direct sunlight at all. Background: Just three severe sunburns during childhood increase the risk of skin cancer by three to five times. Babies and toddlers should play in the shade and be protected there with light clothing and sun hats.

Parents should know the 4-H rule

The same applies to children from the age of two: the best sun protection is plenty of shade. Then there is the "4-H rule": Hat, shirt, pants and high sun protection factor, at least SPF 30, on the uncovered parts of the body.

Special sun protection products for children contain mineral filters such as zinc or titanium dioxide. Their fine pigments do not get into the body, but lie like a protective coat on the skin and reflect the UV rays like small mirrors. Another plus point: They are mostly free from perfumes and preservatives.

Lock heat out of the car

The sun on long car journeys is annoying and makes sleeping children sweat in the car seat. Sun protection, which can be easily attached to the pane with suction cups, provides quick help, as does a cloth that is clamped into the pane.

Wear a t-shirt for swimming

Sounds unusual, but it helps: T-shirt on before you go into the water. This particularly protects the endangered shoulders from sunburn. Clothing with textile sun protection and swimming shorts are popular with kids and at the same time practical. Neoprene suits also protect against the sun, but are usually expensive and the children grow out of it quickly.

There are fancy caps and sun hats for children that make it easy to use this protection. The thinly haired baby head is extremely sensitive and needs to be well protected. In winter from heat loss, in summer from too much radiation.

In addition, children have to drink a lot to regulate their temperature in the sun, preferably water or unsweetened fruit tea. Minimum: a quarter of a liter per hour. 

Cheap sunglasses are dangerous for the eyes

Parents must also ensure that the kids’ eyes are protected from UV light with sunglasses. However, it should be noted that cheap sunglasses without a UV filter are more dangerous to the eyes than not wearing sunglasses. The pupils dilate and so more harmful rays enter the eye. The risk is cumulative. This means that the more UV radiation a person is exposed to, the greater the risk.

Tests have shown that around 60 percent of children’s glasses do not offer sufficient UV protection. In general, according to a report by the BBC on the subject, research has different views. The Royal College of Ophthalmologists recommends that children wear sunglasses when they are out in the sun for long periods, such as on the beach. 

You can recognize good glasses by this "CE mark". With this seal of quality, parents can be sure that the UV protection complies with the EU standard. Stickers that promise 100 percent UV protection are not enough. Because of the scattered radiation, supposedly small, narrow or round glasses should be avoided. All-round protection sunglasses are a better choice. Outdoor activities should take place until 11 a.m. or after 4 p.m. because there is less solar radiation.

Permanent damage can occur

Permanent damage to the lens and retina, caused by the UV-B component in sunlight, can lead to visual impairment. Particularly treacherous: The damage is painless and only noticeable years later, warn experts from "German ring".argumentative essay on drinking age In order to avoid late effects such as clouding of the lens (cataracts) or damage to the retina (macular degeneration), good sun protection for children’s eyes is mandatory.

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Katharina is only two years old and has had countless visits to the doctor. The little girl from Ober-Ramstadt in southern Hesse suffers from an extremely rare genetic defect – a mutation of the so-called CASK gene, which means that the cerebellum and the brain stem are significantly underdeveloped. How Katharina copes with her life despite her handicaps, her papa Jens de Jonge has recorded in a book. We spoke to Katharina’s parents.

Only 50 people worldwide are known to be affected by the mutation of the CASK gene (calcium / calmodulin-dependent serine protein kinase). 14 live in Germany, most of them are girls or young women, because the gene change only occurs on X chromosomes. Otherwise, research knows little about the congenital defect, because it was not until 2010 that a study scientifically demonstrated the mutation and described the associated clinical picture with an underdeveloped cerebellum and brain stem. As a result, the motor, but also the mental development of those affected is severely impaired.

Clear diagnosis only after months of examination marathon

"At first you didn’t notice anything with Katharina", says Claudia de Jonge. "After the birth, there were actually no abnormalities at first glance. Only after three months did we notice that something was wrong, because Katharina hardly developed, did not move like children of the same age." At the U4, the pediatrician finally found that Katharina’s head was too small and her fontanel was already closed because the skull no longer grew due to the untrained areas of the brain.

Then began a nightmarish diagnostic marathon with ultrasound, MRI and blood tests. The agonizing procedure and uncertainty lasted more than a year until Claudia and Jens de Jonge received the clear diagnosis of a defect in the CASK gene: "When the doctors’ suspicions were confirmed, I collapsed", remembers Katharina’s mom. "I just didn’t want to admit that my little daughter, whom I had longed for after our three boys, should be so sick. It was a shock and at first I literally distanced myself from Katharina because I couldn’t handle the situation."

Katharina’s motor skills correspond to those of a baby

Jens de Jonge also made the fate of his daughter difficult. However, the IT clerk initially threw himself into his work, buried himself with his worries, and closed himself off until he burned out. He is currently unable to work, but can be at home with his family.

Today, a good year after the diagnosis, the de Jonges have learned to live with Katharina’s peculiarities. Because the areas of the brain are too small, their motor skills and mobility are currently roughly the same as those of a six-month-old baby. She cannot sit on her own, much less walk, cannot hold her body upright and needs a special chair. Even at night it has to be specially stored and additionally fixed, which is very uncomfortable for the little girl.

"Only sometimes do I quarrel with fate"

But Katharina is a fighter – she is wide awake, obviously understands a lot of what is going on around her, laughs and reacts to her parents and her three older brothers. "We love Katharina for who she is and she gives us a lot of love in return", says Claudia de Jonge. "But especially with me, moments of sadness keep coming up. For example, when I see a healthy girl of the same age in the playground. Then I quarrel with fate and ask ‘why us?’ But these are always only brief moments."

A book about Katharina should also encourage other families

Jens de Jonge found an outlet through writing. At first he recorded all of his experiences in an internet diary. Then he finally published a book about "Katharina’s special world". In it, he describes the beautiful sides of life with the CASK mutation from the perspective of his daughter, moving and empathetic, but also very realistically the dark sides and many adversities.

"With the book I don’t just want to deal with the last two years"he explains. "I want to encourage other parents, whose children are also seriously ill, to never give up and to look positively into the future. Because sitting in a corner and mourning doesn’t do anything."

"Katharina showed us what is really important in life"

Although Katharina’s fate had turned everyday life upside down, it did not throw the family completely off course. On the contrary, emphasizes Claudia de Jonge: "Our standards of values ​​have changed. Katharina first showed us what is really important in life. We now accept much more gratefully and consciously much that we used to take for granted. And it has bonded us much more together as a family – this is especially true for the relationship between my husband and me."

But not everyone in the de Jonges’ social environment was able to cope with the changed life, the new challenges and the worries about Katharina. Some friends and close relatives kept their distance or turned away completely.

The three older brothers often have to back off

The three sons – six, eight and 16 years old – are a great support of the de Jonge team. They love their little sister very much and are happy about every small step in their development. Jealousy was almost never an issue, although they often had to back off.

"Our three sons understood that Katharina needs a lot of attention"says her mother. "But I consciously make time for the three of them on a regular basis, while my husband usually takes on Katharina’s medical care with the many therapies and doctor visits. That is a good division of tasks, because I find it difficult to endure treatments that can be painful and tormenting for Katharina."

Aid association aims to educate and support families with CASK children

The de Jonges now have the aid association "CASK Children’s and Life Aid e.V." founded. "The aim of the initiative is to find other affected people, to exchange and support one another and, for example, to collect donations", reported Jens de Jonge. " But we also want to provide information about the rare disease, therapy options and the latest research."

Katharina’s family also received a lot of support by going public and made contacts from which new friendships even grew. In addition, the de Jonges were finally able to fulfill one of their most urgent wishes: a family car that will be converted for Katharina so that it is handicapped accessible.

Rare stroke of luck: Katharina begins to speak slowly

Nobody can say today what health prognoses and what life expectancy Katharina has. Too little is known about the long-term consequences of the rare gene mutation. "I wish for our daughter"says Jens, "that she is spared major operations, that she can later lead a happy and self-determined life as much as possible and that our sons support her when we are no longer there."

The family is particularly confident about the coming months. In the summer, Katharina will be three years old and go to an integrative kindergarten. In addition, she is just beginning to articulate her first words. "This is an exciting time for us", says Mama Claudia, "because with the ability to speak, Katharina learns to make herself understandable and can thus participate in life in a completely different way. It’s like a small miracle and makes us very happy."

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Book: "Katharina’s special world" by Jens de Jonge, BoD, Norderstedt 2013. www.katharinas-welt.de

Parents cannot and should not monitor their children every second and protect them from all the dangers of this world. Nevertheless, the children’s safety is of course very important to them. We have therefore put together the most important measures with which parents can make their children’s everyday lives as safe as possible.

In our interactive graphic, parents can identify sources of danger in the house

All parents are concerned about the safety of their children. However, parents often expect the dangers in the wrong place: According to a study by GFK Finanzmarktforschung, 85 percent of parents consider road traffic to be particularly dangerous. Only 14 percent of all accidents with children in Germany occur there. Most accidents with children (60 percent), on the other hand, happen in leisure time and at home.

More child safety in the house

But it does not have to be that way. In order to minimize the risk of accidents in the home, it is important to identify all sources of danger for children. Experts recommend parents to examine the apartment through the eyes of a child. That means: go to the height of the child and just crawl through all the rooms with open eyes on all fours to which children have access. In this way, it is very likely that mom or dad suddenly discovered sharp furniture corners, unsecured electrical outlets and cables, easily accessible chemicals, or wobbly furniture that they hadn’t noticed before.

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