A child should be the future: As Dario's family coped with the diagnosis of incurable

Almost every night to be torn Birgit Hardt and Folker Quack out of the bedroom. Your ten-year-old son suffers from Crohn's disease Sandhoff. Epileptic seizures

A child should be the future: As Dario's family coped with the diagnosis of incurable

Almost every night to be torn Birgit Hardt and Folker Quack out of the bedroom. Your ten-year-old son suffers from Crohn's disease Sandhoff. Epileptic seizures are the most benign symptoms of this extremely rare genetic disease are. Gradually lose all physical and cognitive abilities. Meanwhile, Dario can't run independently, crawl, or talk. The ten-year a-care's case, and is going to die. The Doctors give him only a few years.

"A child should for the future be"

Especially Dario's mother Birgit can't believe it still. "A child should be the future – and all of a sudden it is only in the present. This does not fit together,“ says the mother in an interview with FOCUS Online and looks up, shaking his head on the wall of your living room. There pictures show how the lives of the würzburg family once was and how it had Birgit Hardt and Folker Quack always presented: Baby Dario with a pacifier in mom's arms, the family at the ride-on-Main, in the summer holidays in the mountains. The bitter reality is hidden Cabinet directly next door in the kitchen: tablets, pill boxes, syringes. To Dario and alleviate suffering - his fate you cannot change.

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The horror of diagnosis, received the family, as Dario was just four years old. Birgit Hardt and Folker Quack fell "into a deep black hole", as they say. Her life changed radically. Both had to occur in their Jobs a shorter, everyday life, reorganize, and by the way, with your deep pain be.

friends are gone

Dario's parents have to feed your child, wash and dress him and administer medication. Several times a week trying various therapies to put the brakes on his physical deterioration. Mama Birgit travels with Dario to therapeutic riding, dad Folker goes with his son to swim. No matter when and where: "We have our son can have a Minute alone. Every Moment an attack,“ says Birgit Hardt. 60 hours per month, a nurse is at your side. The Rest of the time need to master the couple alone.

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friends, could you reach under the arms, there are hardly any. Many of the families with whom the Hardt-Quacks used to be good friends with, have dropped out of contact, because they were unable to cope with the Situation. "Illness and death in the lives of families with healthy children, just no space," says Hardt. In the years after the diagnosis, almost the complete collapse of the social of the woman's life. "I felt lonely and isolated," says Hardt. Dario (10) is terminally ill, His parents give affected families valuable advice FOCUS Online, Dario (10) is terminally ill, His parents give affected families valuable advice.

"I can buy my son has no friends"

you have Helped and her husband, the contacts to other affected families. To support this, the couple has founded the self-help group "Hand in Hand against Tay-Sachs and Sandhoff". The members are now good friends, meeting regularly and want to push the research to the disease from progressing

A pain that can relate to any mother, but it remains for Birgit Hardt. You can't see your son grow up like the children with whom Dario played earlier. Prior to the diagnosis of your son is celebrated with many friends from the Kindergarten birthdays with cake, candles and balloons. "Today, no child comes to us." Hardt sees Dario's former friends today on kick boards by the city of nozzles. They are larger, meet and enjoy your youth. And Dario? "Not sitting at home and know, thank God, that I pay almost anyone who comes to him and care of him,."

you can read here: Rare genetic disease - - family of Dario (10) lives with a diagnosis of incurable: "We do not plan – we make"

marriages to the diagnosis of broken

Sometimes, Birgit Hardt wants to forget just for a Moment, what is happening. Then the mother opens her Laptop and looks at old Videos. You show your son Dario - how he laughs, plays, sings, and faxing power. So like any other child. Hardt has dozens of films to her son, before him almost all the skills have been lost – in the Knowledge that you will see Dario so probably never again. Your view is rigid, their eyes glaze over when you hear say your Dario on the screen "mom". Today his voice is silent.

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If your child is ill, terminally, are not affected, only the mother and the father individually. Also, the partnership is put to a crucial test. "We know families that are broken up about this," says Folker Quack. So him and his wife doesn't the same thing happen, started the two to lead a life beyond the illness of her son. You go to the cinema, take a dance class and treat yourself to regularly engage in "time-outs" have a great responsibility in the care of her son. The diagnosis has to know Birgit Hardt and Folker Quack even more together, as they say. "But just because we can trust us unconditionally."

So many beautiful moments as possible

Dario's parents know: Only if you protect yourself, you can prepare your son so many beautiful moments as possible. The ten-year-old loves ventriloquist, cabaret, magicians and Musicals. Dario's nursery is full with photos of him and artists that he admires and loves. Regularly, the family moves to ideas, whether they take place at home in Würzburg or further away.

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"for Me, it is today no matter whether or not my blinds gather dust or in the garden, the weeds are overgrown," says Birgit Hardt. For the mother only that her son joy. A has not forgotten the ten-year-old namely still. "Dario can still laugh is hearty and infectious to all."

you to Help Dario and the Association

If you want to Dario and the Association "Hand in Hand against Tay-Sachs and Sandhoff" support, you will find the Link to the donations account.

"Hand in Hand"

Sparkasse Mainfranken

IBAN: DE59 7905 0000 0047 7995 15

BIC: BYLADEM1SWU

"prospects" in FOCUS Online

FOCUS Online, we see not only problems but also solutions. We do not hide what is bad – but we also show what is done, and how each Individual can make a contribution. We give people and ideas that contribute to addressing the individual and societal challenges. To tell these particular stories, we have formed the K-Team. K is a Constructive one. All the items of the K-team can be found under the heading "perspectives".

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Updated Date: 17 June 2020, 07:26

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