Lara Van Lelyveld (37) originally from Howick, Pietermaritzburg, had just landed her dream job as Head of English at Curro, Century City, when the breathing problems she had been experiencing became very serious.
What started as shortness of breath, turned out to be something far worse.
In November 2020, Lara was diagnosed with Idiopathic Subglottic Stenosis, a rare, life-threatening illness that causes the narrowing of a patient’s trachea, as well as inflammation and the development of tissue in the throat area.
Lara, who friends and loved ones describe as ‘bubbly and colourful’, had now gone from living an adventurous life, to losing a big part of herself; her voice and her cheerful laugh.
Since her diagnosis, Lara has been in and out of hospital countless times, to stop her throat from closing. As the cause of her condition is unknown, doctors are doing all they can to give Lara her life back.
Lara’s medical journey
In November 2021, Lara received an endoscopic dilation of the tracheal stenosis, which showed promise, but unfortunately the results were short lived and the scar tissue grew back even more aggressively months later.
In April 2021, Lara was surgically fitted with a stent, which unfortunately failed as the scar tissue began to engulf it.
Lara communicates using pen and paper due to no air around her vocal cords making it hard for her to talk.
In May 2021, Lara had a tracheostomy inserted to help her breathing, as doctors continue to investigate the best course of treatment for Lara.
Currently, under the expert care of Professor Lubbe, Lara’s trachea continues to close. At it’s most narrow, her trachea was a scant 1mm wide, while a healthy trachea should be between 1,5 cm to 2 cm wide. At this stage, it takes about 4 weeks for the trachea to narrow to a diameter of 3mm.
With every procedure Lara has had, the scar tissue grows back quicker and quicker, causing Lara severe discomfort and stress.
‘My dreams are indefinitely on hold’
After a 4-hour-long operation, Lara was fitted with a T-shaped trach tube on 2 August 2021, which unfortunately didn’t work as she was unable to breathe. She has now been given several steroid injections in her throat tissue to see if this will stop her tissue from growing. She will then receive an iron infusion as she has become anaemic.
Apart from the physical pain of her procedures, and the emotional toll it has had on her, Lara has also given up a lot of life’s simple pleasures.
While she has her tracheostomy, she will not be able to swim again in fear of drowning. The chances of her returning to the classroom, the job she loves, are also very slim.
“Truth be told, I’m terrified. I can’t plan my future and so many of my dreams are indefinitely on hold. This disease has brought me to my knees. Each day is a struggle.” – says Lara
Crowdfunding on BackaBuddy
In addition to the above, Lara is also facing a tremendous financial burden, as her medical aid only covers her hospital stays, but not her specialised procedures or medications.
To assist Lara with her medical bills, her loved ones have launched a crowdfunding campaign on BackaBuddy, that has thus far raised over R 31 000 towards their fundraising target of R50 000, to support lovely Lara on her road to recovery.
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