One Family. Eleven kids. Seven NightWatch. Read their amazing story.
The Linders from Blaubeuren have 11 children and 7 of them have untreatable epilepsy with nocturnal seizures. We visited the Linder family at home and report on the large family, which is a role model for liveliness, love and structured everyday coping.
When you have seven of a total of eleven children who have been diagnosed with epilepsy and have seizures at night, you are dependent on support in everyday life and to keep your nerve. The best solution for the Linder family in Blaubeuren was NightWatch epilepsy monitoring, their children’s daily companion at night since February this year.
The “Woman with the Owls”
This summer, the last NightWatch for five-year-old Marina arrives. And our German team comes to visit the Linder family in Blaubeuren. “Is that the woman with the owls?” We hear the children call from inside. And then they are all standing in the doorway, 7 curious children with big eyes. Inside, the first surprise awaits us. The front hall looks like a friendly kindergarten, a colourful cloakroom where each child has its own labeled place. The children sit down neatly in their respective places and we are immediately touched and impressed by so much tidy life, lively childishness, friendliness and curiosity. Mrs. Linder welcomes us with much warmth, she is used to people being curious about her large family of now 11 children.
We brought our new cuddly owl Buddy and the new children’s book about NightWatch for each child and each of them hug their owl tightly. We accompany the family into the beautiful big garden to take some photos. I admiringly ask Mrs. Linder how she manages to be so relaxed and look so good in what seems to me to be a very stressful situation with many children, some of whom are affected by epilepsy. “It’s no use getting stressed out,” says Mrs. Linder, “you can only do one thing at a time”.
The first NightWatch
She tells me that NightWatch has absolutely improved her life. Before her children used NightWatch, she used to pace around the house all night because she was afraid something would happen. “This went on for years, day in and day out, I couldn’t sleep, I had no sleep rhythm at all”. Then, at the beginning of the year, she read about NightWatch on Facebook and was immediately enthusiastic. Together with her neuro-pediatrician, Dr. Johannes Krämer, from the SPC in Ulm, she applied for the first NightWatch for Paul through her health insurance fund. When the first NightWatch arrived, she tried it out on every child and for all of them, NightWatch perfectly detected the nocturnal seizures and alerted them in time. Since NightWatch worked so well, NightWatch was gradually applied for all the other children. “With Dr. Krämer we discuss everything very openly and always together and we get great support there. “For each child, it took about 5 weeks for NightWatch to be approved by the health insurance company. Applying for an aid turns out to be really difficult while we really we need this technical support.”
And now, finally, all the 7 children have their NightWatch. The Linder family can rely on NightWatch, sleep better and they only have to get up in the night when NightWatch alarms. “With NightWatch our nights are a thousand times calmer and I only get up when the alarm rings because I then know that a seizure has taken place”.
Mr. Linder is an engineer and has mounted all the base stations on a board and, of course, labeled them so that you can tell right away which child has an alarm. NightWatch has recently started a cooperation with the app Helpilepsy and the Linder family immediately downloaded the app in the evening, created an account and registered a NightWatch. Now they also see the alarms in the app on their mobile phone which is another improvement in coping with everyday life.
“NightWatch is so ingenious and easy to use”.
All seven children in the family affected by epilepsy have nocturnal myoclonic seizures, which also occasionally progress to generalized tonic-clonic seizures and require emergency medication. Before NightWatch, the Linder family tried another monitoring system with a bed sensor as well as on the wrist, but it did not detect the seizures and Mrs. Linder was disappointed with these products. When she tried NightWatch, she was very relieved since the seizures were detected.
“NightWatch is so very easy to use, you understand it immediately, it feels soft, it doesn’t hurt the children,” says Mrs. Linder. ”It’s just brilliant that the heart rate is monitored at the same time as movement, it’s the only way to detect the myoclonic and milder seizures. That is a great help.
An admirable family
After the photo session, we sit with the family and the children in the kitchen for a while, then one by one all the children retire to their favourite corners with their tablets and other toys before bedtime. The bigger boys shout something loudly from the hallway. “What’s going on?” asks five-year-old Paul, running like a little policeman to his siblings. With the many children and the strong loving parents, the house radiates a happy serenity, really admirable. We feel very comfortable in all this liveliness and love. Later, Mrs. Linder then tells us that the triplets Marina, Paul and Olaf took their owls with them to the kindergarten and that Josefina put a cap on her owl and tucked it in before going to bed. We are very touched and wish the family and the children all the best, lots of support and strength in the future.