“R5 million is how much it costs for lifesaving medicine per year. But R55 000 buys my daughter one year’s worth of the generic medication that will keep her alive.”
This is the outcry of Kerry Glaser, the mother of nine-year-old Kayla Glaser who was diagnosed with cystic fibrosis when she was only six weeks old.
Cystic fibrosis (CF) is a terminal genetic illness that affects every organ in the body. The majority of CF’ers pass away in their 20’s and 30’s. According to Kerry, Kayla has had pneumonia 17 times, several major operations, as well as numerous complications. She has spent most of her life in hospital.
Her medical team has just discovered that not only does she have a collapsed left main bronchial tube, but her trachea has now also collapsed.
“Breathing is hard enough with cystic fibrosis – so this new discovery is absolutely heartbreaking. Imagine trying to water your garden with sticky, gunky glue through a hosepipe. Now add multiple kinks in the hose pipe. Surgeons will need to meet with her lung transplant surgeons to see if surgery is even possible as it may compromise her chances of receiving a double lung transplant.”
Kerry says she has no choice but to put everything aside and do whatever she can to raise funds in order to get Kayla this life-saving medication called Trikafta.
“The problem is that it costs millions every year. Please feel free to research and look up the cost”.
The medication that holds such promise of saving lives costs R5 million. However, the “more affordable” generic costs R55 000 per month and is Kayla’s only hope at this point, Kerry says.
Kerry says that until big “pharma” develops a conscience and chooses lives over profit – the only way Kayla has a future – is through the sheer kindness of strangers who are able to give her more tomorrows by donating.
“I thank God for each and every one of you. I’m a single mom and cannot earn an income while we are stuck in the hospital. It’s beyond terrifying.
“I just want to keep my little girl alive. If you are in a position to help us in any way in this fight – even if it’s just sharing her fundraiser, every little bit counts. I would be eternally blessed and grateful,” she says.
Rallim’s support
Kerry and Kayla stay in Parklands where Kayla is currently a learner at Rallim Prep School.
“Kayla is one of the kindest, most caring little humans you will ever come across. Since she was a baby – through all adversity that she has faced – she is always singing and smiling. When Kayla sees a person or animal sad or in distress – (regardless of age) she instinctively needs to find out what’s wrong and help the person or animal. She has a massive sense of humour and absolutely adores her friends and family,” Kerry says.
Kayla has a Facebook page called Caring for Kayla that her mother started in 2013 to spread awareness. Approximately 4 500 people follow the little warrior princess.
Rallim posted on their Facebook page recently, announcing Kayla’s finally reuniting with her classmates and teacher.
“The joy in the room was certainly contagious as these Grade 3s showed Kayla just how much they had missed her,” the school says.
Kerry says Rallim has been kind enough to share Kayla’s story on their Facebook page and with the Rallim family (teachers and parents).
“Kayla’s teacher, Nabila, has been an absolute miracle worker. From arranging surprise welcome-back parties at Rallim to extra lessons to help Kayla catch up.”
She’s says the Rallim parents have been “beyond supportive. They have rallied around Kayla like she was one of their own.”
Awareness around CF
Asked what measures were in place for her medicine until now, Kerry says not many in South Africa.
“CF isn’t considered a chronic illness in SA. The CF community in SA have been fighting this for decades. It unfortunately comes down to numbers and cost. Fund raising started when Kayla was a baby for multiple different medical equipment and medication. Car washes, cake sales, raffles, auctions you name it – we have done it,” Kerry says.
Kerry explains that the miracle medication is a temporary solution.
“It buys them time and stops the daily suffering and pain while we wait for a cure. Like diabetics who take insulin shots.” She is urging the public to share awareness around CF.
To make a donation, follow the link https://gogetfunding.com/caring-for-kayla.
