A mother in northern England has been diagnosed with a “debilitating and unbearable” rare condition making her fear that she is missing out on her son’s life.
Kate Mallinson battled “unbearable” symptoms for 14 years before being diagnosed with Ehlers-Danlos syndrome (also known as EDS), a genetic condition that affects the connective tissue and muscles, in June 2022.
The disease affects one in every 5,000 people in the world, according to the National Institute of Health’s Library of Medicine.
On top of the serious illness, Mallinson also struggles with scoliosis and Crohn’s disease.
“I am being tortured in my own body and I can do little to alleviate the symptoms – but I try mentally to stay strong and get through the day,” Mallinson told NeedToKnow.Online.
The 45-year-old struggles to hold up her own head and experiences frequent dizziness, sickness, shooting head pain, nausea and intense neck and facial pain.
At one point, her jaw dislocated, and she’s had five surgeries, including a total joint replacement. “I still get dislocating on the right side of my jaw and have to often ‘clunk’ this back into place,” she explained.
“I have to wear an eye mask at night because my left eye doesn’t stay closed after jaw surgery, and I have a mouth guard to protect my teeth from breaking, too.”
Mallinson lives on a restricted diet; she carefully monitors what she eats to manage her weak joints, brain fog and numb fingers and toes.
“I have sore ulcers, bowel and bladder weakness, lack of coordination and ultimately, like my brain isn’t working. I have many days where I have totally run out of strength and there is just no more fight in me to take another breath,” she said.
As her symptoms worsen, Mallinson was forced to quit her job and struggles to spend quality time with her 10-year-old son Samuel.
“On ‘proper’ bad days, I can’t get up to get my son ready for school or take him there, and my mum has to come round and do everything for me,” she told Jam Press.
“I can very rarely run around with him or play any outdoor games, and on the occasions I have, I have to stop and vomit.”
Her husband Roy has had to step up, taking on more responsibility in raising their son, such as picking him up from school every day. “I can’t manage it by that time in the day – I’m truly exhausted,” Mallinson said.
“Every day is different, and I try hard to make a ‘good’ day for my son when I can and do as many ‘Mummy’ things as possible.”
But young Samuel has noticed his mother’s absence and worries about her constant pain and sadness. “I feel guilty that I cannot help Mummy,” he said.
“I try to do things like tidy up and help make tea and look after myself a bit, but it’s so sad seeing her in pain all the time. Also, not knowing what to do when she is crying.”
Seeing his mother in excruciating pain is all that the sweet boy can remember. “All my life, I’ve seen Mummy in pain, and it would really make me happy to see her smiling, not crying.”
But before falling ill, Mallinson was working toward achieving her doctorate, as well as being an outgoing, active person.
The courageous mother hopes to have craniocervical surgery to be more present for her family.
The surgery involves fitting a metal brace onto her skull and attaching this to her spine. It won’t cure her condition, but she hopes it will help alleviate her debilitating symptoms.
She’s hoping to raise $51,000 for the life-changing procedure. “Please help……..I cannot afford to save my own life,” her GoFundMe page begins.
“I have to learn to live with EDS and I have accepted that – but this pain is not liveable and it is not an option to continue as I am.”
Although there are risks involved with the surgery, such as paralysis and infection, she believes the surgery is her only chance to get back to a “normal” life.
“It’s been a roller coaster of hope and despair and my mental health has deteriorated dramatically. Guilt is also a very strong emotion, as not being the mum Samuel deserves or being a good wife is so consuming,” she shared.
Samuel has been her main motivation to continue fighting and searching for ways to jump back into her life in a real way instead of watching from the sidelines.
“I want to enjoy life and it not be one constant existence of getting through each day the best I can without thinking about ending it all. I want to see my son grow up and all of his exciting adventures instead of it only going on around me.”
“I would do anything for this soul-crushing pain to stop,” Mallinson said.