Paula Jackson was an Oxford University graduate, a passionate dancer, and a caring, outgoing person who aspired to use her education to make a difference, when suddenly, at age 27, a neurological disease stopped her in her tracks.
Her symptoms included excruciating pain, dizziness, shortness of breath, nausea, extreme sensitivity to light and sound, and difficulty swallowing — all of which turned basic tasks like eating or showering into a massive ordeal and put an end to her career and social aspirations.
Eventually diagnosed with ME/CFS her condition kept on worsening and for the past two years she has been housebound and increasingly bedbound and requires fulltime care. Nine years down this gruelling illness track, Paula, 36, recently made a discovery that has raised her hope that she can get her life back. She found out about a subset of people with her symptoms whose condition is due to a rare craniocervical instablitiy (complications from connective tissue laxity between the head and neck) that responds well to specialised spinal surgery.
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Her mother, Pam Jackson, together with family members, have started a GoFundMe page for Paula, called “Paula’s Ladder to Life”, which aims to raise £135 000 (R2.8 million) by mid November, in order to get her the surgery as soon as possible before her condition deteriorates further.
In an interview, Pam, who is a veteran Christian social worker who has cared for children with cancer and served in a shelter for homeless girls, told me about Paula’s birth. “It was a very difficult birth. I went to see her in the incubator. And I saw this child, this baby, of incredible sweetness and incredible determination. And I just wondered: ‘What is going to be required of this baby that she has been given this incredible determination that I can see just with her lying there?’.”
22 years later, after being awarded a scholarship, Paula completed a Masters in African studies and land reform at Oxford. Thereafter she returned to South Africa. She was working full time, dancing three times a week, and “poised to use her education to make a difference” when she suddenly became ill.
Pam said: “We don’t understand why things happen but we have to keep praying and have faith and know that God is with us in everything even if He’s not smoothing the way.”
Paula’s GoFundMe page sheds more light on her need for specialised surgery as soon as possible. There are only seven surgeons worldwide who can perform the surgery required to treat her rare condition. Paula and her family consulted four of them and they agreed that she has hypermobility spectrum disorder. Her ligaments have become too loose to properly support her head. This has resulted in her skull sinking onto her vertebrae, moving around too much and affecting the brainstem and nerves. This has caused detriment to her automatic functions, such as breathing, heart rate and sound and light processing.
More than 1 000 patients have successfully gained their lives back after the surgery that Paula requires. And Paula has been watching the progress of 50 different patients to ensure that the operation’s results are long-lasting.
Between Paula, who cannot work and her parents, who are both social workers, they cannot afford the cost of the surgery on their own. Hence the family started the Paula’s Ladder of Life campaign to raise the money for her to get surgery urgently. So far they have raised £82 000 (R1,7 million) of the required £135,000 (R2.8 million). Contributions are welcome on Paula’s GoFundMe page and any inquiries can be directed to paulasladdertolife@gmail.com
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