Help Ryley fight to get her life back

Hi, My name is Trish. Ryley pictured is my daughter and is 20 years old.

On Friday the 13th of August 2021 , a catastrophic event happened to my darling daughter.

She had the most horrendous reaction to a medication, which gave her a headache ‘like no other’ and was rushed to A and E where she collapsed on the floor as we arrived, vomiting and writhing around in pain.

Whilst this was going on Ryley said she had pins and needles in her hands and feet and felt like her entire body was vibrating. Misdiagnosis followed misdiagnosis for a year. Eventually forcing me to London (Queens Neurological Hospital) where a top private specialist concurred that she had been on her way to having a cerebral venous sinus stroke, a rare kind of stroke that can kill outright. Fortunately, Ryley survived this, however, she has had life-changing, debilitating symptoms and conditions since this day and our life as we knew it has been unrecognisable.

Ryley has been left with 6 conditions as a result of this reaction, the three main ones are intracranial hypertension (overproduction of cerebral spinal fluid which presses on her brain and can erode the eye disks in her brain, causing blindness/eye damage). Whilst this can often be controlled by medication, Ryley is sadly intolerant to those drugs. She has now had two brain stents, but neither has been successful.

Ryley has been left with a condition called New Daily Persistent Headache Disorder (NDPHD), a terrible condition where normal painkillers don't work and other headache medication offered has landed her back in the hospital with severe tachycardia. Ryley has now had a permanent headache, every day for two years straight, she has severe chronic fatigue, which impacts her life so much that even being pushed out in a wheelchair for ten minutes is too much for her. Her quality of life is very very poor.

Ryley additionally has back pain and can’t sit up for long without being in agony making it difficult to try and do things like crafts to help her get through the days. She has an auto-immune condition, which affects her heart and makes her immune system overreact, causing her face to be flushed, and further intolerant to drugs and supplements.

As a parent I have been in sheer hell, going from medic to medic only for Ryley's complex condition (there are many co-morbidities) to often be misunderstood, denied, and even gaslighted.

After spending many thousands of pounds over the last 2 years, personal finances are seriously under pressure. I am looking to raise funds to pay for Ryley to see a specialist in the US. I have established that he understands the complexity of Ryley's condition. Funding will pay for Dr Andrew Maxwell to carry out genetic and other blood tests that aren't available in the UK. The ultimate aim is for him to design a medication treatment regime with the hope it will calm her autoimmune system and give her her life back.

Thank you.