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mind, body & EDS

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Washington D.C.

UPDATE: First Post-Op Visit Results

My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.

Continue reading “UPDATE: First Post-Op Visit Results”

Jetting Off to D.C. 

Time to jet off back to Washington D.C. for my first official post-op neurosurgeries and brain surgery check-ups! I’ll also be attending some Gala events and will update you on my patient advocate role soon. Keeping my fingers and toes crossed that our 3 weeks stay won’t turn into an unexpected 9 months this time around…Wish me luck! ūüáļūüáł‚úąÔłŹ

#FourMonthCheckUp #Neurosurgeries #BrainSurgery #EDS #SpinalFusions #Chiari #ICH #BrainClot #Stents #HealthJourney

Lumbar puncture, road trip to Virginia and tornadoes!

Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

Continue reading “Lumbar puncture, road trip to Virginia and tornadoes!”

UPDATE: Third Neurosurgery Success & Discharged

Great news to share with you all: the neurosurgery was successful and I was discharged from hospital the day after (Wednesday 13th April) and will update you all on more details about the neurosurgery and my recovery next week. I am struggling a lot with the amount of pain I am suffering with, but am trying to rest as much as possible to start the healing process. My immediate family are here, and I am so grateful for their and all of your support, love and care. 

Third Critical EDS Neurosurgery Appeal Video

“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.'”¬†Eleanor Roosevelt

#CareForLaura Wristbands – Show Your Support

As a “thank you” to those who have helped Laura on her way to a new life, there is, on offer, a token of appreciation in the form of a #CareForLaura wristband. ¬†Wearing one will be a reminder of what has been done, and what continues to be needed, for Laura and her family. If you have not donated yet and wish to contribute to Laura’s Third Critical Neurosurgery (12th April in Washington D.C.), please donate a minimum of ¬£10 to Laura’s medical crowdfunding YouCaring site and you will receive a wristband (please read details below).
Continue reading “#CareForLaura Wristbands – Show Your Support”

THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED

PLEASE SUPPORT BY DONATING HERE. I am in need to medically crowdfund £190,000 for all 3 EDS neurosurgery medical expenses and rehabilitation treatments.

Since recovering from my second surgery for Tethered Spinal Cord Syndrome done on 17th February by specialist EDS neurosurgeon in Washington DC, I have been undergoing further specialist clinical tests and MRI’s for my lower neck. I have been losing sensory function of my left arm throughout this past year and the specialist Upright MRI equipment they have here in the USA has¬†finally revealed that I will¬†unfortunately be needing a 3rd neurosurgery on Tuesday 12th of April 2016 in Washington DC by the same specialist EDS neurosurgeon. Continue reading “THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED”

My Second Critical Lifesaving EDS Neurosurgery: Tethered Spinal Cord Syndrome 17th February 2016

QUICK UPDATE: Discharged from hosptial

My Second Lifesaving Neurosurgery on Wednesday 17th February went well, even though there were some unexpected additional surgical procedures that were required during the operation to help improve and preserve my quality of life. Unfortunately, I have lost a significant amount of sensory function in my¬†lumbar spine and lower limbs and control of my bladder/bowels. However scary this is for me at the moment, we are hoping these sensory function nerves have not been permanently damaged already (pre-surgery), and that instead it will heal with time – but this is very uncertain. Continue reading “QUICK UPDATE: Discharged from hosptial”

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