One woman spoke of a terrible disease that had turned her world upside down.
Leah Smith has been tied up in bed for the last five years after her mother discovered something was wrong with her.
Family time is running out for her daughter in dire need of life-changing surgery.
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The Denbighshire mother has to lie flat and often has seizures and numbness in various parts of her body.
Leah’s ordeal began in February 2017 when she first experienced a “stroke-like” episode.
Leah’s mother, Debbie Smith, 62, told the Liverpool ECHO, “She has had stroke-like symptoms. I was actually sitting next to her when it happened.
“It was completely out of the blue. She looked a little blank, she could speak, but I saw that she wasn’t quite with us, so I called an ambulance.
“It was like an altered consciousness, I could see that she wasn’t herself.”
In the weeks that followed, Leah, 40, underwent tests and MRIs to determine the cause of the symptoms.
During this time, she began to feel numb in her legs and a lumbar puncture was done to check for multiple sclerosis (MS).
Doctors later found that the lumbar puncture had caused CSF loss.
Although she underwent a procedure to fix the leak, which provided Leah with temporary pain relief and allowed her to sit for an hour at a time, it ultimately proved unsuccessful.
She has since been diagnosed with Ehlers-Danlos Syndrome (EDS) – a group of rare hereditary diseases that affect connective tissue – and arachnoiditis.
Arachnoiditis is a pain disorder caused by inflammation of one of the membranes that surround and protect the nerves in the spinal cord, causing chronic pain and neurological problems.
Debbie said, “She has a recumbent wheelchair that she can’t even use right now because she’s in so much pain everywhere, and it’s getting stronger.
“Your muscles and everything are getting worse.
“It’s gotten exponentially over the past 12 months. It’s getting weaker and weaker and in more pain.”
Leah has only left her home for hospital appointments for the past five years – and even then she does so with the utmost effort and with the help of a reclining wheelchair.
The 40-year-old needs a series of life-saving surgeries that, according to Debbie, are only possible with private health insurance.
The family said they’ve spent the past five years getting Leah the help she needs, but they fear time is running out.
They believe that specialists in Germany and England can help.
A Gofundme page was set up to raise enough money for the operations and special transportation to get Leah there.
Debbie said, “It is devastating that you feel like you are in this state and you have struggled as much as we have struggled to find out the reasons for what is going on. And to try and fight to get help, to find out that you can only get help from specialists who you have to pay for. “
A message on the donation page reads: “Our family urgently needs your help to save our beautiful Leah. She is our daughter, granddaughter, sister, aunt, friend, and most importantly, a wonderful mom to her amazing children.
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“Leah has Ehlers-Danlos Syndrome and needs life-saving spine and vein surgeries.
“For the past 5 years Leah has struggled with whatever she needs to stay with us as we struggle tirelessly to somehow get her the help and treatment she needs and deserves so much.
“All of our struggles have only resulted in walls and dead ends.
“Many know that Leah had a lumbar puncture in 2017, which resulted in a herniated disc.
“What most don’t know is that the lumbar puncture and subsequent procedures that attempted to repair the leak caused catastrophic damage to their entire spine and central nervous system, leaving them in relentless pain and unimaginable suffering.
“The pain is around the clock, it is not lasting and has to stop.”
You can donate here to help Leah.