Grace Connor and others get well fund

This is Grace January 2019. 
Dizziness has prevented her from getting to the shower since before Christmas. 
She hasn't managed breakfast before 7pm since November due to intense stomach pain and nausea. Grace brings stoic to a whole new level. 


Then there are the days it all gets too much.  What is cracking me up as a Mum is how these days are increasing with so little effective support available.  Eight years of trusting while waiting patiently for help has broken her spirit. 


Thankfully, so far, Grace is still there behind the layers of the really rough days.
She knitted this having read that weighted blankets can help. 

(more pics below the blurb). 

My name is Miriam, Mum to Grace who is 19yrs old and currently living with T1 Diabetes, Chronic Lyme, Mastocytosis, POTS, Dysautonomia & ME. Her dad (Shay) died of cancer when she was two years old. We live in Scotland. Unfortunately, there is no local specialist care for her more complex symptoms, so she has fallen through the cracks since 2011. Grace has been bedbound since April 2015.

Grace has no memory of what it is like not to feel nausea. Grace is near breaking point with unrelenting pain and other rubbish symptoms since 2011. Being allergic to most medications limits her treatment options. We have identified a machine, known as an An-Di Energetic Corrector; we are confident this can help her and other sufferers back to health. Grace responded well using this treatment in Germany 2017, but limited funds meant we were unable to complete the necessary treatments.  Travel is a nightmare for her, even the ten miles to the local hospital. We have good friends who have found using the An-Di life changing. The recommendation, by the doctor who developed the machine, based on Grace's bloodwork, is that Grace would now require a self-treatment every three days for about a year. Based at home to minimize any stress to her system.

My plan, with your help, is to use our house to create a non-profit facility to make this and other treatments available in an affordable way. Most families dealing with chronic illness have exhausted savings, remortgaged etc. I have converted our spare bedrooms into potential ‘treatment’ rooms. My hope is that more parents will come on board so we can gather as friends to provide networking and other approaches to support each other. 
Local complimentary treatment practitioners have offered to donate sessions. 
My hope is that parents will benefit too as their bodies often need support, but we tend to prioritise our children.
I am asking for your help to make it possible to purchase an An-Di machine to complete Grace's treatment and once my wee lass is improving, to make this treatment available to others.

I promise to pay every kindness forward. 
My heartfelt thanks.
Miriam

Some family background:
Grace was born at home (Dublin) 1999. One of her Dad’s proudest moments was delivering her with the help of the midwife. Two years after delivering Grace, Shay died of Multiple Myeloma in 2001. Grace has two older brothers: Brian and Alan. All three inherited some fab musical gene. 
We moved to Scotland in 2006. Access to Steiner Education at secondary level and the Findhorn Foundation prompted the move. Grace attended Gordonstoun from Year 10 and earned an academic scholarship for 6th Form but was too unwell to avail of it.  Over the past two years Grace has achieved 120 credits with the Open University. This entitles her to attend Uni once well enough. Due to brainfog it was hard won but securing this gives her hope that she can follow her dreams once her body starts playing gameball. Grace runs her own etsy page to help fund her treatment called: Grainnesaurusrexx.  Though, in the past six months, due to increasing symptoms, she has had to decline several orders. All likes to her page much appreciated. xxx

For my part, I am grateful for the sense of shared parenting in any support. Thank you.
My background is Occupational Therapy. I have additional qualifications in Development Studies, Counselling, Biomagnetism pair therapy and other energy therapies. Our journey into complimentary medicine began in desperation, faced with Brian’s allergies when we discovered that an epipen would be fatal for him. The success we had with Brian inspired Shay to explore options when he was diagnosed with cancer that allowed Shay to survive past five ‘die by dates’ against the odds. It gave us all a precious extra eighteen months.We are using and have tried several approaches with Grace. We suspect we may have lost her without this but her body needs bigger guns now as she is slowly deteriorating despite our best efforts.Adding an An-Di machine to her protocol would allow us the opportunity to restore her back to a full life, nausea free, or at the very least tolerable enough (since untreated mastocytosis may have left some damage) to get on with her life.

Once she is back on track; I love the idea that our headbanging experiences can contribute to a positive support for other families.  It makes some sense of the of the past eight years.

My first step is to get my girl to a day without constant nausea. Thank you.

Thank you for reading through all of this, there are so many worthy causes. 
My priority just now has to be my lass; it is way past the time for her to be free to enjoy life. 

Please help me to support her and others out of the misery of bedbound and back to life. 
They say that each share on social media is potentially worth £10 in donations.  
So many friends are in similar situations to ours so please don’t feel any pressure to donate.  Hugs and just knowing you have our backs helps so much too.

I look forward to paying every kindness forward.  Thank you.
Shay's workmates were an amazing support when he was ill.  It has been a source of tremendous joy and healing for me to pay all of their kindness forward. 

Education is key as so many of us waste time not knowing where to get effective help.  
It took us years and crazy funds going to London Specialists when POTS can be identified in 15minutes in a GP surgery and for the most part her results have been ignored locally.  

Our kids need something better. There are too many of us in this situation. 

My heartfelt thanks.
Miriam

P.s. Shout out to a charity that is offering affordable herbal treatment with free consultations treating Lyme. Check out https://www.facebook.com/gnhctscotland/
(Grace has salicylate sensitivity so unfortunately herbs are limited for her) 
GNHCT is an amazing service. Please check it out and spread the word. Thanks

Grace is open to trying everything but Mastocytosis and Lyme need the big guns x
Any approach we can do ourselves we get on with, we need your help for the next one please. 

2016 Grace and I got to Harry Potter Studios on one of the Kings Hospital visits. It was her birthday so they let her open the big doors. It was fab. 

Grace meeting her brothers.
Dressed in a 'Wallace and Gromit' babygro as Brian (wriggling in Shay's arms) desperately wanted a baby brother so he wouldnt allow pink.

(Brian and Grace before she became bedbound 2015)
...my having made the mammy plea... any chance of  one that isnt goofy?'


Alan and Grace playing 2004


Grace helping to make juice for her Dad's Gerson protocol. 


Using alternatives made it possible for Shay to stay lucid so he had quality time with the children until his very last day. 


 Grace, the week she was diagnosed with T1 Diabetes.  2003.


Moments after Shay had delivered Grace.

The midwife and I had made noises but it was when he said  "she is gorgeous"  that her eyes popped opened as if she recognised his voice.  He was forever talking and singing to her in the womb. 
(For those unused to homebirth...Shay is wearing swimming trunks).


Jock keeps guard of Grace.  He has also earned the name 'hypocat' as he has  been known to wake Grace when she is low.
Both Mastocytosis and POTS cause havoc with her diabetes making management very unpredictable and years of sleepless nights.  

Below was August 2018. 


Please help us to get Grace back on track whatever way you can.
I promise to honour any donation or share. Thank you xxx