Cape Town – A Cape Town mother is pleading for assistance as she tries to save her daughter’s life with a new treatment for those diagnosed with cystic fibrosis (CF).
CF is an inherited disorder that causes severe damage to the lungs, digestive system, and other organs in the body.
Kayla Glaser, 10, was diagnosed with CF not long after birth and her single mother, Kerry, 37, is at her wits’ end trying to prolong her daughter’s life.
Speaking to IOL, Kerry said she hit rock bottom when her daughter was diagnosed.
“When Kayla was born, she was a month premature.
“She spent first weeks in NICU, took her out and I remember we went to a wine farm with friends, others also recently had babies. Kayla was just so skinny.
“I kept taking her back to the stork’s nest. They kept asking me if I was sure if I was feeding my child. Kayla would have 120ml but was not picking up weight,” she said.
Kerry said her daughter’s weight dropped significantly to 1.77kgs and at this time people thought she was abusing Kayla.
The mother of two said she told them her daughter was being fed and eating often.
“A doctor came to see her who had a hunch she had CF, we were sent for tests and confirmed the diagnosis on February 14, 2013.
“I never heard of CF before, I remember asking the doctor if she was serious. My world pretty much ended that day.
“What no one tells you when the child is diagnosed with a terminal illness is that you actually grieve because the future you planned for your child will never come true and you actually taking a different journey.
“She hasn't had a normal childhood. She missed so many things people take for granted,” Kerry said.
After Kayla’s diagnosis, Kerry, who was suffering from post-partum depression said made CF her life and research all she could on the illness and social media groups.
“I become part of a group called Rare Diseases. Made it my business to know everything.
“I also made a group for CF moms in South Africa so that when their child gets diagnosed they know they are not alone. I’ve made resources available to moms. We’re about 60 moms all there for each other,” she told IOL
The mother said she is struggling financially and has not been able to stay employed over the past decade.
“I spend all of my time with Kayla when she is in hospital. In paediatrics parents have to be there all the time. Just this week and a half, and we here for another 2 or 3 weeks.
“She’s hooked up to antibiotics which run 24/7. She can’t get IV’s her veins blow out all the time. Kayla cannot leave her room, no one can enter the room. She has to be isolated.
“I have tried to stay employed during these 10 years, but unfortunately, from an employer's perspective, I understand employing someone like me is a liability so when your child goes into hospital for three weeks or three months at a time no one really wants to keep you around.
“I got my honors in marketing and strategy and qualification for relationship and intimacy therapist. I tried a few times to start things I can run from the hospital but unfortunately, it has not worked out for me,” Kerry said sadly.
The mother says R10 000 a month has to be paid for medical aid expenses for Kayla.
Currently, the young girl is at Christiaan Barnard Hospital where her trachea and her left brochial tube had collapsed.
“She currently has pneumonia for the 18th time,” the devastated mother said.
However, there is light at the end of the tunnel as a treatment for CF patients has been made available in most first world countries.
Kerry said unfortunately, she needs financial assistance in raising the funds to get her daughter this life-saving treatment.
“I learned through a Facebook group called CF mothers - a group of mothers from all over the world- about this drug and I have learned so much from this group.
“Trikafta is available in most first-world countries. It is part of their healthcare system so they get it for free. CF gets little to zero support in SA.
“Trikafta is three pills the children take in the morning and then don’t have to do anything else.
“It regulises something and they are then normal. Essentially you won’t have to plan a funeral when your child is in their teens or in their 20s.
“Kayla’s situation is much worse than your average CF patient,” Kerry explained.
While there is relief available about the new treatment, this mother now has to find a way to raise R5 million a year to get her daughter this much-needed medication.
“My biggest hope for these funds is to get the medicine. There is a generic available which is under R60 000, while that is still crazy, it is a little bit of hope than R5 million a year.
“I felt so hopeless and lonely for the past 10 years. You pretty much sleep on a chair and watch your child suffer and there’s nothing you can do and life just goes on for everyone else,” Kerry added.
If you would like to assist in getting Kayla the much-needed life saving treatment she needs, donations can be made to:
K Glaser
FNB
Cheque/current account
Account number: 6262 587 6084
Branch code: 200909
Swift code: FIRNZAJJ
You can also follow Kayla’s journey on her Facebook page: Caring For Kayla Glaser.
robin.francke@inl.co.za
IOL