Nancye Rewi cuddles her daughter Caydence, who was diagnosed with CDKL5 in 2018. Photo / Paul Taylor
Nancye Rewi cuddles her daughter Caydence, who was diagnosed with CDKL5 in 2018. Photo / Paul Taylor
Nancye Rewi watched her daughter taking her first steps, saw the joy in the little girl's eyes, and felt the joy in hers.
Caydence, 3, was diagnosed with rare genetic disorder CDKL5 deficiency in 2018. Doctors said she'd never walk. Yet here she was, in October, moving towards her mum.
"It's a miracle, a memorable moment both you and your child will never forget," Rewi said of the walking.
"It's a glimmer of hope that makes you believe that anything is possible if you just fight for it."
Joy in those moments is crucial for the Rewi family because of how horrific CDKL5 deficiency, a form of genetic epilepsy, can be.
Caydence will never talk, doctors say, and because the disorder is so rare, doctors can't predict how much time the family will have with her.
"This life is about her, giving her the best quality of life possible. Letting her experience things other children do, while watching the joy in her eyes."
The disorder, caused by mutations in the CDKL5 gene, can manifest in a broad range of symptoms and severity including intractable epilepsy and neuro-developmental delay impacting cognitive, motor, speech, and visual function.
Caydence has only recently learnt how to walk and her mother Nancye Rewi could not be more proud. Photo / Paul Taylor
It's believed to be present in one in every 40,000 to 75,000 births, with girls more prone to having it.
"There is no cure for it, she was put on medication to stop the seizures, but none of the meds worked," Rewi said.
"She had low muscle tone and after her seizure her brain connections were wiped clean.
"As a parent, you would go to the ends of the earth to protect your children; hopefully you never have to, but I do it every day."
It was only after two intensive therapy sessions including one in Australia last year, that Caydence finally took her first steps.
"She had to learn how to be a baby. She underwent intensive therapy, four hours a day to strengthen her muscles, and her brain connections and make her more aware of her body and how things worked," Rewi said.
While Caydence underwent therapy her three sisters were the "most supportive, caring sisters ever", Rewi said.
"Love and time is free, and her sisters have been amazing."
The therapy excluding flights, accommodation and food cost the family $6500. Of that $5000 was fundraised with a Karma Keg fundraiser towards the end of 2018.
Rewi took a while to come to terms with her daughter's condition.
"I thought 'why me? why us? why her?' I was heartbroken.
"A week later reality sank in and I decided to fight. I decided that I would do what I can, anything and everything in my power to help her," Rewi said.
"There is no time for self-pity or rest. The clock isn't on our side, there is lots to do and lots of joyous and memorable moments to be had.
"She needs me and I need her, it's that simple."
Caydence is not on any medication currently, but she still requires intensive therapy and Rewi is once again holding a Karma Keg fundraiser and auction.
She is hoping to raise $10,000 because the therapy itself costs $9500. This time it is in Christchurch from August 17 to September 4.
"I have been planning this since October when she took her first steps. I also want to raise awareness and ensure there is support for people with CDKL5."
Rewi is grateful to all the businesses and people who donated items for auction and The Filter Room Hawke's Bay for hosting the Karma Keg.
Karma Keg is a fundraising initiative where you get what you give, if you believe in karma.
The Filter Room will donate a keg and punters pay anything from $6 (minimum) to $100 for a pint, whatever they think it is worth.
The fundraiser is on Friday at 5pm at the Filter Room.
The family have also set up a Givealittle page at https://givealittle.co.nz/cause/caydences-journey-with-cdkl5.
