Emely is our oldest daughter, a 26-year-old single mother who has full custody of her 3-year-old son Bentley. Since the father is no longer in the picture, she cares for her boy all by herself.
Emely was like any other girl in her age up until June 2016 when she started to feel ill and weak. The doctors were clueless as to what was wrong with her but after approx. 10 hospital visits the doctors finally gave her the diagnose that was about to change our whole family's life. We were told that our daughter has a very rare autoimmune disease, which there are no known cases of survival to date, and that she will most likely not live for much longer if we don't find a way to stop or slow down the progress of the disease.
The name of this type of autoimmune disease is "necrotizing autoimmune myopathy" and our biggest concern is that there has only been 300 reported cases worldwide and therefore, sadly, there is very little known about the disease.
In the past year Emely has been sent between different doctors and hospitals, to no avail, as no-one has felt confident enough to treat her due to the lack of knowledge. But the year has not only been a nightmare and emotional struggle for our family, it has also been a financial challenge since Emely's health insurance did not cover anything at all due to that her disease is so rare.
WHERE WE ARE TODAY:
We are running against the clock as Emely is getting weaker for every day that passes by. The disease has turned her own immune system against her which breaks down all the muscle tissue around in the body. A year ago, in June 2016, Emely had 80% lesser muscle strength compared to other girls in her age.
In our daily battle since the summer of 2016, trying to find a medical solution that can help Emely, we have been in contact with many experts worldwide in the field of autoimmune diseases. Among all the recommendations we received from experts, there were several of the recommendations leading up to the same place, a holistic clinic in Switzerland called “Paracelsus Al Ronc”.
This clinic is supposed to be one of the world's finest where they have a team of experts that really go to the bottom to find out WHY a certain disease occurs in the body before they can start with personalized treatments to be able to stop the disease.
WHY WE NEED YOUR HELP?
With the conventional medical profession at a loss we are now turning to this clinic in Switzerland where Emely will receive individual biological treatments depending on multiple lab tests. Alongside with the treatments they will perform detoxification of heavy metals and toxic waste from her body as it also could be possible triggers for the autoimmune disease.
To give Emely a chance of survival we are looking to raise €100 443 (approx. 1.000.000 SEK), which will help towards three months of treatment, flights and accommodation for Emely and me (her father) as I´m going along to support her.
Everything depends on this fundraiser but we hope to get her to the clinic as soon as possible.
WHAT IF WE DON'T MEET OUR GOALS?
We really do hope! But if we for any reason aren't able to achieve our goal, then the funded amount will be added to a savings account for Bentley's future.
Below I estimated all costs to give you an better understanding for how we came up with the total amount that we set as our goal.
Treatment: €865/day equals €77.850 for 90 days (777.184SEK)
Accommodation: €11.305 (112.859SEK)
Unexpected expenses (ICE): €10.260 (102.426SEK)
TOTAL: €100.443 (approx. 1.000.000SEK)