A mother in the north of England has been diagnosed with a rare condition that makes her fear she is missing her son’s life.
The disease affects 1 in 5,000 people worldwide According to the National Institutes of Health Library of Medicine.
In addition to serious illness, Marinson also suffers from scoliosis and Crohn’s disease.
“I am being tortured in my body and there is little I can do to alleviate my symptoms. But I am trying to stay mentally strong and get through the day,” Marinson told NeedToKnow.Online. Told.
The 45-year-old has trouble lifting her head and frequently experiences dizziness, illness, headaches, nausea, and severe neck and face pain.
At one point my jaw dislocated and I had 5 surgeries including a total joint replacement. “I still have the right side of my jaw dislocated, and I often have to put this back in place,” she explained.
“I have to wear an eye mask at night because my left eye won’t stay closed after my jaw surgery. I also have a mouth guard to keep my teeth from breaking.”
Marinson has a diet. She carefully monitors what she eats to manage her weak joints, brain fog, and numbness in her limbs.
“I have ulcer pain, bowel and bladder weakness, lack of coordination, and eventually my brain doesn’t seem to work. There have been days when I was completely exhausted and fighting to catch my breath. no more,’ she said.
As his condition worsens, Marinson is forced to quit his job and struggles to spend quality time with his 10-year-old son Samuel.
“On a ‘proper’ bad day, I can’t get up and get my son ready for school or take him, and my mother has to come and do everything for me.” She told The Jam Press.
“I rarely run around with him or play games outdoors.
My husband, Roy, had to step up as he took on more responsibility in raising our son, including picking him up from school every day. “I can’t manage it at that time of the day. I’m really exhausted,” Marinson said.
“Every day is different, so I try very hard to make it a ‘good’ day for my son by doing as many ‘mommy’ things as possible. ”
However, little Samuel notices his mother’s absence and worries about her constant pain and grief. “I feel guilty for not being able to help her mom,” he said.
“I try to clean up, help make tea, and take care of myself, but it’s so sad to see her in pain all the time. I don’t know what to do when I’m there.”
Watching his mother suffer excruciating pain is all the sweet boy remembers. “All my life I’ve seen my mom suffer. Seeing her smiling instead of crying really makes me happy.”
But before his illness, Marinson was a sociable and active person, striving for his doctorate.
The brave mother has craniocervical surgery and wants to be more present for her family.
Surgery involves attaching metal braces to the skull and attaching them to the spine. It won’t cure her condition, but she hopes it will help ease her debilitating symptoms.
She wants to raise $51,000 for life-changing surgery. “Please help me……..I can’t afford to save my life,” she said go fund me beginning of the page.
“I had to learn to live with EDS and I accepted it. But the pain is unbearable and I have no choice but to stay.”
Surgery carries risks such as paralysis and infection, but she believes surgery is her only chance to return to a “normal” life.
“It’s been a rollercoaster of hope and despair, and my mental health has taken a dramatic turn for the worse. Guilt is also a very strong emotion, and it’s exhausting to see Samuel not being a good mother or being a good wife.” she said.
Samuel was her main motivation to keep fighting, looking for ways to get back into her life in a real way, rather than watching from the sidelines.
“I want to enjoy life, but not the constant existence of spending each day doing the best I can without thinking about finishing everything. I want to see all of your adventures.”
“I would do anything to stop this soul-crushing pain,” Marinson said.