Update 18/11/2019

Erin has made it successfully through the surgery, and is doing really well in her recovery. We’re still fundraising in the hopes that through the kindness of our community we’ll be able to cover the tremendous debt we’ve taken on for our shortfall in funds – this will put us in the best position to service Erin’s significant future care costs. We’d have never made it this far without the generous support of everyone who has contributed, for which we’re forever grateful. Given the severity of Erin’s condition, we are feeling so blessed that we were able to get in for a surgery date this year. The surgical team here let us know just how lucky we were to be seen when we were, as on opening her up, there was significant unnatural movement in her C0-C2 verterbrae.

Erin has become very unwell in recent years as a result of brainstem compression due to instability in her neck, leaving her bedridden. She has been offered life-saving surgery in Barcelona and needs your help to get there. There are very few Neurosurgeons worldwide with the specialism for Erin's medical circumstances. We need to raise this money by 1 November 2019 as Erin’s condition is rapidly deteriorating. Please help in any way you can.

Any and all donations are welcome and greatly appreciated.

How did this happen?

Erin has a connective tissue disorder which affects her collagen production; leading to various problems such as loose ligaments, joints, blood vessels and weak tissues.

Those of you who know Erin are probably aware that she has undergone neurosurgery in the past for Trigeminal Neuralgia (successfully) and it is likely that the connective tissue disorder can retrospectively take credit for that too.

She has now been diagnosed with severe instability in her neck due to the weak ligaments resulting in cranio-cervical instability, atlanto-axial instability, sub-axial instability and bilateral jugular vein compression (we’ve been informed that the left vein is completely collapsed). This means each time her head moves damage is caused to her brain stem and her skull is too heavy for her neck to support.

That sounds complicated. What's the impact on her life?

The compression causes a constellation of symptoms including daily neck and head aches, chronic pain, problems with memory and speech, tinnitus, pins and needles, vision disturbance, frequent vomiting and nausea and dysfunction of the autonomic nervous system (such as breathing difficulties, postural orthostatic tachycardia syndrome, and poor sleep). Erin now spends well over 20 hours a day lying down and is in constant pain. To avoid further damage, worsening symptoms and dislocation of her neck, she has to use a cervical collar to aid immobilisation.

What’s the solution?

Erin will need to have her neck and skull fused with titanium pins to create the column of support necessary to remove the compression of her brain stem, jugular veins, stop the sliding of her skull and the dislocation of her neck. She will lose up to 100% mobility of her neck, but this is a small price to pay given her horrific quality of life.

How can we help?

If you can contribute in any small or large way by donating and sharing her campaign it would mean the world to us. We know everyone has financial struggles, but if you can miss that coffee, avocado toast or that takeaway it can really make a difference.

If you are able to have a dress-up day, cake sale or similar at your school, work or club in aid of her cause that would be absolutely amazing. Community spirit is how we are going to be able to achieve what we need to.

What's the ultimate goal?

After Erin's surgery and time to recover, she hopes to be able to live a meaningful life again, complete the final two units of her postgraduate degree, strengthen her body to maintain her other joints but most importantly, to start a family and enjoy the supportive and wonderful family and friends she already has!

ErinAid

More information on craniocervical instability

Information on Erin's super surgeon