A Claremont family is trying to raise R3 million for their daughter to undergo emergency spinal surgery in the United Kingdom.
Paula Jackson, 36, developed myalgic encephalitis (ME) or chronic fatigue syndrome at the age of 18.
A subset of patients who experience ME develop connective tissue laxity and craniocervical instability (CCI).
Paula’s mother, Pam Jackson, director of Ons Plek, a shelter for girls in Mowbray, says: “Paula needs spinal surgery which will stabilise her head on her neck and relieve the pressure on the brain. Due to loose or lax ligaments, the head, which is heavy, is essentially ‘wobbling’ on the neck.”
Since the age of 27, Paula’s quality of life has been deteriorating due to the impact of ME.
For the past nine years some of her daily symptoms included having a shortness of breath, nausea, dizziness and vertigo, severe neck pain and debilitating headaches, extreme sensitivity to light and sound, and difficulty swallowing.
Before her health condition deteriorated Paula completed a Masters’s Degree in African Studies and Land Reform at Oxford University in England, where she studied on a scholarship. She loved dancing, and being part of her church, now she can’t even leave the house.
Ms Jackson, who takes care of Paula, shared the struggles that her daughter must go through on a daily basis. “I watch her move slowly out of her bed and across her room, which she insists on doing every day.”
Ms Jackson says her daughter who was normally so independent, must depend on her to be fed, washed and dressed.
She says her daughter longs to see the sky though because she can’t lift her neck without experiencing brain fog and being impacted by a heightened sensitivity from light and sound.
Ms Jackson says Paula showed a determination to understand everything about her health condition to try and find a way to cure herself from the disease.
She has searched the globe online to interact with patients who have a similar condition and also interacted with five neurosurgeons overseas.
Ms Jackson says Paula needs to travel to a hospital in Leeds, England, for the spinal surgery by a neurosurgeon.
“For three years she has watched the progress of 50 patients who have had this operation, to satisfy herself that this is has long term successful effects.”
“The operation fuses the head and top two vertabrae to give stability. This operation is well known in cases of trauma. However, where patients have connective tissue disorders a special technique is required using intraoperative traction. The head is lifted slightly and set at an angle. Only seven neurosurgeons in the world do this operation,” says Ms Jackson.
A Gofund me page to raise funds for Paula was launched by her family. With the campaign name of Paula’s Ladder To Life: Urgent Spinal Surgery.
So far around R1.2 million has been raised for the operation, which is 40% of the target required.
“We need to raise R3 million in six weeks to have the operation. That is the cheapest option for South Africans. Paula’s condition is worsening fast. She should have had this operation two years ago. She needs to have it as soon as possible to prevent permanent damage,” says Ms Jackson.
Many people on social media shared messages of support for Paula. Her sister, Kirsty Jackson says her sister is braver than anyone she knows. “Despite what life has thrown at her, she has done everything she can to continue living as fully as she can.”
A former Oxford student, Marwan Kilani who met Paula during her studies, says she is a remarkable, brilliant women with a compassionate soul that still has so much to give to the world.
David Robertson who met Paula through her house sitting agency says she is the kind of person who can take this gift of life and pay it forward 1000 times over.
Ms Jackson added: “For all the years I have been working at Ons Plek I having been raising funds to support at-risk girls, I never thought I would be in a position where I needed to raise funds to support my daughter who needs help.”
If anyone would like to donate towards Paula’s operation, visit her Gofund me page at https://gofund.me/98126183 or contact her mother on pam.reflect@gmail.com
