They called her Princess. From the moment she was born, there was no denying the resemblance little Daniella had to older brother Lukas Bredahl and her beautiful mother, Pia Bredahl of Vejle, Demark. She laughed. She sparkled. She shined. She was a light that filled the room and opened the heart to joy.
But there was a darkness that covered that light. Dystonia. A rare, neurological disorder that causes painful involuntary muscle spasms. It made Daniella scream. It made her twist into contortions. It made her cry. It made her break your heart.
Dystonia has no known treatment or cure at this time, so when Pia realized that she could not bring relief to her child, she went to social media for help. She posted the above video of one of Daniella’s “storms” desperately asking for something, anything, to bring an end to her daughter’s suffering. Immediately, the suggestions came, but really, those who made suggestions, myself included, were also searching. Dystonia is a frustrating disorder because the doctors don’t immediately know what to do or say that will be even be a symptom reliever because everyone with Dystonia is unique and reacts differently to things, especially medication. It is not uncommon to have a severe dystonic reaction to the very medication that was given to help, and sometimes those reactions can be permanent.
In Daniella’s case, she had been given a lot of medication. It did not stop the spasms. Daniella spent many days and nights in the hospital. She had pneumonia more than once, and this time on August 15th, 2015, at just two years old, it was too much for her withstand. After enduring a spinal tap and drilling in bone marrow to receive fluids, Daniella’s little body laid down the fight and she breathed her last breath.
The muscle spasms in the chest of someone so tiny can prove a great challenge in one with Dystonia. Even a cold can become a major obstacle in a child with Dystonia. It’s rare, but under the right metabolic or neurological complications, a person with Dystonia can pass away.
The thing that drew me to Daniella was not just the heartbreaking video of her dystonic storm or the pictures of her in a brace, so she could be upright,
but in the way she smiled and laughed. Daniella did and was able to experience joy and happiness. And when she did, her joy and laughter was infectious. Captured forever in pictures, a face of delight. In spite of her suffering, Daniella knew she was loved. And she gave love. Bushes of it. Her father, Nicolaj Nulle Fomgaard, was absolutely in love with his darling little girl.
Her brother Lukas adored her.
Her uncle Johnny Bredahl was smitten with her (not pictured) and her grandmothers, Vera Bredahl (not pictured) and Jytte Brauner Fomsgarrd cherished her.
They all wanted the best for her, and as any family does, they wanted her out of pain. But not this way.
It’s heartbreaking. The helpless feeling of losing a precious child to a mysterious disorder. To do nothing is intolerable, so Pia Bredahl advocates raising awareness about Dystonia and finding a cure. At least a treatment that works, not a temporary ease, like some find with Botox injections or deep brain stimulation, but something that arrests Dystonia so those suffering don’t have storms, spasms or tremors. She wants this unreasonable, unresponsive and incurable disorder to gain recognition among the medical community and be brought into the forefront of neurological disorders so that people will realize that research isn’t just for this rare disorder alone, but for every neurological disorder that causes involuntary movements. And she wants it done for every child who suffers. Every child who is held captive by their muscles and kept from having the life that every child deserves. She wants Daniella to be remembered. Not just for the darkness that surrounded her, but for the light she brought into the world. We promise Pia, we will remember Daniella. ❤️
Here is Linda Thompson’s video: http://youtu.be/HNuGK6G9_KQ
This is the fundraising campaign for Little Daniella’s Headstone : http://de.gofund.me/e92qa2j8
Another beautiful video:
Please visit: dystoniauk.org or dystonia-foundation.org
( the information for this article was taken from the Facebook page, Daniella’s fight against Dystonia )
Reblogged this on The ups and downs of being wobbly and commented:
At the moment, people are campaigning to get September recognised as Dystonia Awareness month. This highlights the reason why – it needs to be talked about, recognised by medics and new research funded for treatments and ultimately a cure so people especially children don’t have to hurt lie this.
I am extremely lucky in that my dystonia will respond to levedopa. It may not be a perfect treatment but it gives some relief. Let’s raise awareness so everyone gets the cure and treatments we need.
Please sign the #dystoniapetition and make September dystonia awareness month
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Thank you for your support
Anytime. I hope you don’t mind me reblogging it, I never know the etiquette of reblogging. Still learning the world of WordPress
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It’s okay. I’m not either, but it’s okay. Thank you so much!
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