Main fundraiser photo

Continuing to serve her soul purpose and expand

Donation protected


HJÆLP OS MED AT HJÆLPE VORES MOR, HUSTRU OG KÆRE VENINDE!
HENDES HJERNE SKRUMPER. 

DEL GERNE….

Pernille er 49 år gammel.  

Hun er mor til to skønne døtre, hustru, passioneret kundalini yogi, elsker naturen og er en engageret sjæl, som fortsat ønsker at udvikle sig og udvide sin bevidsthed, selvom hun i marts 2019 har fået diagnosen cerrebelar ataksi (nedsat funktion af lillehjernen). 

Hvad er ataksi, spørger du måske?

Ataksi er en neurologisk tilstand, hvor lillehjernen skrumper - en sjælden sygdom. Som betyder, at de funktioner som er
styret af lillehjernen langsomt forsvinder/nedsættes.

Pernille's  finmotorik – klodsethed, hendes gang er påvirket og hun oplever en krop med ændring i muskelspænding. Balanceforstyrrelser med faldtendens, utabile øjenbevægelser og dobbeltsynl. Til tider utydelig tale og dårlig synkefunktion.

Der findes i dag ingen helbredende behandling. Ataksi betyder for (næsten) alle, at alle funktioner svinder, og de fleste ender i kørestol uden mulighed for at kommunikere med os, da kroppen langsomt ville blive ødelagt og i sidste ende give op. 

De danske læger kan ikke hjælpe!

Pernille har de sidste år, haft udfordringer med balancen, som hun troede bare. var resultatet af et piskesmæld i 2017 og
havde haft problemer med enorm træthed og sidst i 2018 kunne hun ikke skrive længere.

I februar insisterede hendes mand på, at komme med til egen læge.

Hun blev haste-indkaldt til MR-skanning, fordi lægen havde mistanke om en tumor i hjernen. Indenfor 3 dage havde hun beskeden om, at det ikke var en tumor i hjernen, men at hendes lillehjerne skrumper!

Efter beskeden var det som om, at Pernille gav "slip" og det er gået "hurtigt" for hende i at opleve en krop, hvor funktionerne svinder. Som nævnPernille arbejder benhårdt hver dag på selv at gøre hvad hun kan - bl.a. ved hjælp af fysisk træning, fysioterapi, talepædagog, akupunktur.

I februar 2019 – fungerede Pernille normalt, følte hun. 

Hun havde succes med eget yogastudio og havde for nyligt udgivet en fantastisk bog om Kundalini Yoga, som hun i mange år har arbejdet for at udbrede, hvormed hun har gjort en enorm forskel for rigtig mange mennesker.

Nu kan hun ikke længere gå selv uden støtte fra rollator. Hendes udtale er påvirket, hun har synkebesvær og er hårdt ramt på finmotorikken.  Hun oplever kramper/rystelser, og selv små gøremål udmatter hende, da hun har et meget lavt energiniveau.
Hun har måttet lukke sin virksomhed pga. sygdommen. 

HJÆLP OS med at HJÆLPE Pernille!

Målet med denne indsamling er, at Pernille få adgang til behandling, der kan forbedre hendes livskvalitet og forlænge hendes liv - ihvertfald hendes livskvalitet - i en krop med denne sjældne hjernesygdom.


Denne indsamling er registreret ved Indsamlingsnævnet, og der er nedsat et udvalg, der sikrer, at alle donationer anvendes til Pernilles behandling i USA, Tyskland, herunder konsultation, konference og forhåbentlig behandling med
henblik på et længere og bedre liv med ataksi.

Vi er dybt taknemmelige for alle bidrag til denne indsamling.


For yderligere information se evt. den engelske, uddybende tekst herunder:



HELP US TO HELP MOTHER, WIFE & DEAR FRIEND!

HER BRAIN IS SHRINKING

SHARE - SHARE - SHARE - SHARE - SHARE

Pernille is 49 years old, mother of two beautiful daughters, wife, passionate about kundalini yoga (since 25 years), loves
nature and is committed to continue to serve her soul purpose and expand despite having been diagnosed the brain
diagnosis Ataxia (shrinking of  the small brain) in march 2019.

In February 2019 she still had all her functions.

It started with her having issues with her balance, clumsiness and writing, and her husband Per insisted on going to the doctor. After doing several tests the doctor called the attending doctor at the nearby hospital immediately! All signs of a brain tumor. 

Within 48 hours she had an MRI scan. Another 48 long hours passes by and they called from the hospital informing her that she did not have a    tumor but shrinkage of her cerebellum and cerrebelar ataxia / atrophy.

Now  She cannot walk without support and a rollator are her new friend!. Her speech gets slurring, swallowing is sometimes an issue and her fine motorical skills are gone. She experiences small tremors and doing small everyday things tires her out. So she says herself that the daily fatigue and "energy management" is the worst. 

8 months ago she was an independant entrepreneur, with her own yoga studio, writer and now close of her business and yoga studio. There is no known treatment of ataxia.


Why we are asking for your help❤️

We are asking for your help, so they don't have to take a second mortgage in their house or borrow from the bank.

The doctors experience with witnessing Ataxia is in others are that it is a progressive condition, and the loss of functions in legs, arms, speech, swallowing etc. is inevitable. Patients with ataxia experience the loss of all functions and a shortened life span.

This donation campaign aims for Pernille to consult with, to investigate, be treated with stem cells (fingers crossed), which could extend Pernilles life span and quality of life and thus  become the best and most fit version of herself with this rare brain disease and to seek other possibilities such as acupuncture etc.

A consultation/treatment costs approx. 11.000 USD. and she will need continued care. The initial evaluations with a renowned specialist cost  US 1500.

With the donation we also pray that Pernille is able her to attend an annual Ataxia Conference in March 2020 in Denver and connect with the world's leading experts and other people with this life shortening and challenging condition.

Ataxia is in-reversible so this is not about curing her condition. 
It’s about ensuring to be in the best shape for as long as possible so diet, exercise and supplements are important for her brain health.

She will need to travel  with an assistant - as she is unable to travel alone. 

We will keep you updated on this as we move along. ❤️

We sum up

The funds collected (and this campaign is officially registered with the Danish indsamlernævn) is managed by a committee that ensures that the donations given solely are used to enable Pernille (and an assistant) to travel to USA or other places in Europe.  Be seen and hopefully receive stem cell treatment, and make it easy for her to access and have relevant diet, supplements, and she stays active - so that may will her prolong her life and life quality and temporarily pause her brain shrinkage.  

We thank all of you for donating , and making a contribution towards her health care and to all of you, who are “buying” her precious kundalini yoga productions thereby contributing to her health care. 

Pernille's says: "I dont know where I would be without these extraordinary tools, oils and it is my great joy to be able to share their power with you."

 

Thank you

 

Donations 

  • Marina Engel
    • kr500 
    • 4 yrs

Organiser

Pernille Dybro
Organiser
Hjørring

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