Lena-Marie is six years old and suffers from a very rare genetic disorder that is severely multi-disabled. Their life expectancy is far too short. That’s why your parents want to make your every day as beautiful as possible. But Yvonne and Tobias Beigelbeck need from Schwabhausen help.
Schwabhausen – It was so short, the perfect happiness. Lena-Marie, only 48 hours ago was born, lies on a blanket, peacefully, next to her is a small bear music box, in front of a photographer, the Moment it is established. Only a few hours later, the newborn photo is of normality, of happiness. Lena-Marie has a seizure-her first seizure. The first of very, very many. Your first two months she spends in the ICU.
The Whole thing was around six years ago. While Tobias Beigelbeck Hausen tonight in Schwab, the story of his daughter is told, he keeps the whole time your Hand. To say that caresses your fingers, while he says sentences that no parent endures: “My daughter will die before me.” Lena – Marie was a wish child, her parents were both 25 when they came to the world, were so proud, happy and full of love that your could be the name of your daughter on forearms tattoo. Years later, you don’t know what’s wrong with your Little one.
Lena-Marie is a severely multi-disabled, suffers from a very rare genetic disorder. The name of the parents hear for the first Time, as the Small three and a half years old. D-bifunctional protein deficiency. This gene defect explains, “why she is the way she is,” says mum Yvonne. Their poor eyesight, weakness, deafness, and seizures, the trunk muscle, the constant mental development.
Before the beigel Becks knew what your daughter really thought you and the Doctors that their developmental delay was just only the seizures due. Your best time Lena-Marie had when she was 18 months old. That was the time you turned to a corner of the living room in the other crawled, everything on the head, like a banana, and milk sections of the handle and each with your Smile enchanted.
And then Within two weeks all of the development progress were gone. Lena-Marie stopped to tell mom and dad, no longer handle your favorite toys, crawled on the ground, not moving, hardly more. Because of the lack of movement, postures such as a clubfoot, and scoliosis were to fail. By the time the neurologist ordered a special genetic test was – finally – certainty brought. But certainty also meant that a doctor said that your daughter is not very likely to be older than 13 years old, and that you will constantly develop back.
is A good day at the beigel Becks, if you noticed that “doll”, as they call their Small, loving, laughs a lot. When you come into the room and you are already in front of hinkichert, spotlights. This is a good day. Lena-Marie can’t sit alone, nothing to grab, no longer can mom and dad fix correctly with the view. But: you can still smile. And this Laugh, this smile, “all is one. This is the reason why we keep through all of this. All of this,“ says Yvonne.
“You’re my little bumblebee,” says Tobias Beigelbeck and caresses the Hand of his daughter and gives her a kiss on the forehead. “Bumblebee doesn’t know that you can’t fly, so it flies.” Knowing Lena-Marie, don’t know your parents. You know: you want to make your every day as beautiful as it is, as normal as possible. And they now come to their limits.
Lena-Marie weighs 20 pounds, shortly before her sixth birthday, she got the long-awaited wheelchair. But does not fit in the family car, it must be disassembled each Time before the Transport. Luggage does not fit into the car. What would make life easier for the family tremendously, is a car with a built-in wheelchair ramp. For Lena-Marie loves to be outside. She loves the Zoo. And she loves the forest, loves it when the Wind rustles through the leaves of the trees. Earlier, because she loved Pizza and Splashing in sea water on the beach of Bibione. All the want to make your parents so long to do it. “These are the moments you don’t get more,” says Yvonne Beigelbeck. However, trips and holidays without the new car? Now impossible the beigel Becks say. A Ford Grand Tourneo Connect is the car that you want to buy.
The insurance company “feels in this case is not the responsibility of only the auxiliary supply takes over,” explains Tobias Beigelbeck. Therefore, he addressed a touching letter to the Public, in which he asks for donations for the new car. Ask for help. This is actually a thing that the beigel Becks don’t like. For them, it was a huge overcoming. They are fighters, “have made it this far alone,” says the 33-year-old dad. When it was clear that Lena-Marie was sick, he threw up his studies, went to work immediately full-time, now he works as a service technician for medical devices in Odelzhausen, Mama Yvonne works part-time at the mobile emergency service of the Caritas. The two save every Euro “but with the car we can’t do alone,” he says. The reactions to his letter were overwhelming: “it gives you back some Faith in humanity.”
In September Lena to-Marie from Kindergarten to go to school in Schönbrunn. The Beilgelbecks have to decide consciously to take this step. Mama Yvonne says: “You don’t know what’s coming, you know, how much time you have.” Your daughter “should be allowed to make all the experiences. Everything should be as normal as possible“. The grandpa was after their birth every day in the hospital, has already bought a backpack for school. With Horses. And Unicorns. And Stars.
chain of helping hands
The money will be donated in our “chain of helping hands”, comes to 100 per cent, children, families and senior citizens from the town and district of Dachau. If you specify as a purpose, “Lena Marie”, your money goes to the family Beigelbeck. The donations account: Sparkasse Dachau: DE29 7005 1540 0380 9731 15 or Volksbank-Raiffeisenbank Dachau: DE68 7009 1500 0000 0199 50.
