In memory of Merryn

Apple

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Note: Apple added an update to this thread on August 21, 2017

Merryn suffered from an incredibly severe form of M.E alongside a severe form of Ehlers Danlos Syndrome and other conditions. I believe she was 20 years old. :(



"To all the lovely people who followed Merryn's journey, it is with the greatest sadness we tell you all our darling Merryn passed away in the early hours of this morning.
Merryn was a true fighter and an inspiration, she coped with so much with a smile and a true Princess attitude, her palliative care team said they had never seen such suffering but such grace and bravery too.
Merryn wanted to thank each and everyone of you for the support, caring and love you showed to her and to us. It meant so much to her and to us too.
We feel so lucky to have had - and still have - Merryn in our lives. A quote that means a lot to us and is so very fitting at this time is 'How lucky am I to have had something that makes saying goodbye so hard'. However, it's not really a goodbye - more like a see you later.
Run free, our darling girl, our Princess Merryn"


https://www.facebook.com/MerrynsMagicalFund

:heart:
 
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Gingergrrl

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'How lucky am I to have had something that makes saying goodbye so hard'.
Am so sorry to see another young person leave us so soon. This quote from her family really struck me and Merryn clearly made a huge impact on so many people in her short life. God bless her and as the poster above me said, "Rest in peace where there is no illness or pain".
 

Diwi9

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Thank you for sharing. Such a beautiful young woman, may she finally have peace. Clearly loved by her family and even in sickness, a blessing to them. Gone too soon and for no good reason other than medical research neglect. I hope her family is at peace knowing she is. These people gone-too-soon and those among us suffering a living death is why we must continue to advocate as best we can to save lives. We are all worthy.
 

Jo Best

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Thank you for creating this memorial thread. Merryn turned 21 just ten days before her passing. She had been delightfully proactive for change for people with ME since her teens. I had the privilege of meeting Merryn on Facebook through the family-friendly Let's Do It for ME community campaign, run by people with severe ME to help raise awareness and biomedical research funds for the Invest in ME Research Centre of Excellence for ME. Merryn and her mother Clare were making and selling charm bracelets inscribed with the with 'Hope' 'Hold on' 'Pain ends' and continued supporting others when Merryn's own health worsened. A kind, courageous young woman and a beautiful soul.
 

Gingergrrl

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Merryn and her mother Clare were making and selling charm bracelets inscribed with the with 'Hope' 'Hold on' 'Pain ends' and continued supporting others when Merryn's own health worsened.
I'm not sure if appropriate to ask here, but is there a place that we can purchase one of the charm bracelets in Merryn's honor or to support her favorite charity?
 
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I'm not sure if appropriate to ask here, but is there a place that we can purchase one of the charm bracelets in Merryn's honor or to support her favorite charity?
I looked on ber facebook page the other day for some info but didnt find any. Her fb page is worth a look. Just an amazing young brave woman. Seems she was a fighter, advocate, and did the most anyone could to live life while confined.
 

Gingergrrl

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That's a lovely idea @Gingergrrl but I don't know if Clare had any left after Merryn's health got worse. If I manage to find out I will let you know.
I looked on ber facebook page the other day for some info but didnt find any. Her fb page is worth a look.
Thank you both and I did look at her FB page but did not see any info about the charm bracelets. But if you hear anything, please let me know. It would be great to do something for charity in her honor.
 

Konflict

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Rest In Peace Merryn. I have also been developing EDS symptoms since taking methylated vitamins and believe to be headed down the same road. I pray you watch over me and can someday help me get a diagnosed or something to treat this.