Every day is for Dario’s family, a battle against Despair and against the time. At the age of four was diagnosed with the boy from Würzburg, Morbus Sandhoff. The neurodegenerative – that is, the nerve cells of the brain in question – metabolic disease is genetic and is one of the so-called “Rare diseases” (see Info).
Morbus Sandhoff is incurable. There is no therapy. Patients progressively lose all motor and cognitive skills. Most affected children die before their third birthday. Because Dario at the still rarer juvenile (in Childhood and adolescence occurring) suffers from a Form of the disease, he has a little more time: six to 16 years, my Doctors. No longer walk, or speak of the ten-year-old can crawl in the meantime.
“The only thing we can do is know the time to enjoy”
“We find that Dario is going to die,” said Birgit Hardt and Folker Quack. “The only thing we can do is enjoy the time with him.”
The ordeal of Dario and his family started early. As Dario three months old, Mama Birgit was, began to feel uneasy, something was wrong with her son. “There was no specific reason, it was kind of dark and foreboding,” says Hardt, in an interview with FOCUS Online. They rolled through books to the child’s early development, brought Dario to children’s doctors and the early intervention centre, without result. “Everybody told us that we would have to Worry about,” recalls dad Folker Quack.
private dad Folker Quack with his son Dario, when you Swimming
doctor to family: “I have never seen”
I rushed As Dario, at the age of three years in Kindergarten for no reason down a flight of stairs and suddenly could not walk anymore, his parents took him immediately to a specialist clinic. Five weeks of Tests, examinations, conversations. “Dario suffered a lot”, remember his parents. “He wanted to run again and back in the nursery.” A doctor informed the family eventually: “I don’t know what has her son. I’ve never seen anything like this.“
Only half a year later, the family received a certainty. The devastating diagnosis was the one. Another blow for Birgit Hardt and Folker Quack Doctors and experts have told you that you would probably never find another affected family. “The helplessness, the loneliness came,” tell the parents.
Rare diseases
In the European Union is considered a disease as rare if not more than five in 10,000 people in the EU are affected by it. There are a total of more than 6000 different Rare diseases, is the total number of victims in spite of the rarity of the individual diseases is high. In Germany alone, about four million people with a Rare disease (SE) are estimated to have, in the whole of the EU of 30 million people. About 80 percent of Rare diseases are genetic, or supported, rarely are they curable. The National action Alliance for people with Rare diseases (NAMSE) is trying to improve patient care for those Affected in Germany. This strategy brings together our existing initiatives, networked researchers and Doctors, and brings together information for Physicians and patients.
But they decided for themselves and to fight for the future of her only son. “It was unbearable for me, that maybe somewhere, a scientist at the disease research, and nothing from my son knows,” says Hardt. She and her husband researched the Internet and came across Timothy Cox, one of the researchers in the UK to the rare disease.
About him were Dario’s parents on a European self-help group meeting in Paris. 15 months after the diagnosis of Hardt and Quack met on eleven other affected families that received help, support, and began to hope.
New drugs could reasons, to alleviate symptoms of
on the way back from France, they decided to have a German offshoot of the self-help groups. Today’s Hand represents “in Hand against Tay-Sachs and Sandhoff in Germany” 32 Affected and their families. They meet regularly, exchange ideas, and work to ensure that the disease can someday be cured. “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”.
Some families have to healing to try and take part with success. 2019 Tay was taken-Sachs and Sandhoff for the first time in Europe, in a drug study. The chances to find a means of disease cures, are extremely low. However, new drugs can alleviate the symptoms of the disease and the life of the person Concerned, extend it.
private parents of the self-help group for Tay-Sachs disease Sandhoff at a Meeting.
On Dario’s parents hope. They might as well give up. “We have said: no, we do not accept. There is always hope.“ From probably the worst Situation for every mother and every father, you have drawn strength and many other families given hope. You have shown that self-help works. Two years ago, their group has been awarded by Elke Büdenbender, the wife of the Federal President, as a “lighthouse project”.
“We plan – we make it easy”
And Dario? “For him, life is ok the way it is”, is his mother. He laughs a lot, has fun in life, loves cabaret and Musicals. His parents no longer plan for the future. If your son has a desire to try to Hardt and Quack to meet him.
Until recently, you were with Dario in Berlin in the Mamma-Mia-Musical – a lifelong dream of Dario. And also in the everyday life of the family lives for the Moment. If Dario wants strawberries while shopping in the supermarket, for example, then Mama Birgit buys you – even in the Winter. “I don’t know, finally, whether he can eat in the spring still.”
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
The FOCUS of Online In the
