Jen’s Journey to a Quality of Life.
Fundraising campaign by
Jennie Smales
-
£25.00raised of £2,500.00 goal goal
No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities
PLEASE HELP ME RAISE FUNDS TO ENABLE ME TO TAKE THE NEXT STEP IN STABILISING MY SPINE.
Last year I raised funds in order to have an upright MRI as the NHS refused to fund one. This MRI found several problems within the area of my Cervical Spine, including many levels of Subaxial Instability and also Atlantoaxial Instability. There may be other issues but I need a qualified Neurosurgeon to check out my scan images and medical history.
I was seen by a private specialist Rheumatologist who has tried to help me find a doctor here in the UK to help me. But I keep hitting brick walls. I thought a scan would give me the opportunity to get help, but due to having Ehlers Danlos Syndrome (faulty collagen) no UK doctors will touch me! Not just me, there’s hundreds like myself.
My life is wasting away. I have a soft collar at the moment and have been using my funds donated by a local Baptist Church to pay for highly specialised Physiotherapy to get my neck muscles in the best shape possible. Currently they’re working in completely the wrong way and I don’t even breathe correctly! All due to the constant pain and spasms. Soon I’ll be swapped into a hard collar in order to see if this improves my symptoms. If it does, that means spinal stabilisation surgery is a good option for me.
So now I’m back to fundraising. I’ve tried to get in with NHS neurosurgeons. I’ve literally begged them alongside my reports and referral from my GP. But it isn’t happening. So I am raising money to go private. To see one of the best doctors in the field who works in Barcelona. Money raised is to cover the appointment, travel expenses for myself and a carer and also any extra tests required. Then, when I know for sure what treatment I need, the fundraising starts again to get me to the point I can hopefully have surgery and turn my life around.
My children are nine and two. I have to spend over 90% of my time in bed or resting right now. I’m in constant pain and missing out on most of their lives. I don’t like to fundraise for myself. The thought of an operation on my neck terrifies me. But I need to try. Because I am a mother and I need to be there for my children.
Organizer
- Jennie Smales
- Campaign Owner
Donors
- Jennie Smales
- Posted On Mar 10, 2018
Thank you Chris for the donation. Fingers crossed I can find the energy to keep going and pushing this.
- Chris Albery-Jones
- Donated on Mar 08, 2018
I desperately hope that one day we can change this incredibly unfair system - in the meantime though, this is the only option, so the best of luck raising the money you need. Hope this helps a little x
The End.
Update posted by Jennie Smales at 12:12 pmThank you to those who did donate. I stopped sharing etc due to online bullies. But the small amount I raised helped me get to my London appointments and I’m coming to come to terms with never getting abroad for help if needed. If I can’t raise this I have
Finally got my Aspen Vista Collar fitted.
Update posted by Jennie Smales at 05:00 amSomeone from the local Baptist Church kindly donated me a hard collar for my private physio therapist to fit. It’s REALLY made a difference to my pain levels and lots of other problems; which is great news!! If the collar didn’t help surgery would be pointless and I’d just have
Here is the email I sent the NHS neurosurgeon....
Update posted by Jennie Smales at 01:33 pmDear Mr C*********, My name is Jennie Smales, my referral to yourself was sent early January. Prior to this referral I had an upright MRI at Medserena and an appointment with Dr H********. As you may know, have you had time in what I’m sure is a busy schedule, I. . . . .
Donors & Comments
- Luke Grailey
- Donated on Aug 23, 2018
I know its small but i hope this donation helps you on your way.
- Jennie Smales
- Posted On Mar 10, 2018
Thank you Chris for the donation. Fingers crossed I can find the energy to keep going and pushing this.
- Chris Albery-Jones
- Donated on Mar 08, 2018
I desperately hope that one day we can change this incredibly unfair system - in the meantime though, this is the only option, so the best of luck raising the money you need. Hope this helps a little x
- Jennie Smales
- Posted On Feb 19, 2018
Thank you Yasmin for the kind donation. I really appreciate it. The Upright MRI has already been done. It was covered by my first round of fundraising. But now I need to find the money to get help from a neurosurgeon. That’s what this campaign is for. Xx
- Yasmin Smith
- Donated on Feb 19, 2018
I Truly hope you can get your MRI ASAP as I know how urgent this is for you, but also your family. Sending you love & zebra hugs x
I know its small but i hope this donation helps you on your way.