KATI’S BACKBONE
THE ALLEN FAMILY ARE ON A DESPERATE SEARCH FOR ANSWERS A brave little girl’s fight for life
It’s been a rough six years,” begins Esther Allen. The mum from Raumati Beach sighs as she begins to detail the exhausting journey her family has been on in a desperate bid to find answers to their daughter’s rare spinal condition.
Kati Allen is a six-year-old with a zest for life. You name any task and she’ll try her hand at it, no matter the obstacle. But Kati has quite a big hurdle threatening her ability to have a normal childhood and grow up with her brother Regan (8). This unique little girl has doctors stumped – there is no-one in New Zealand with the same condition as hers, Esther (28) says.
Kati was born with scoliosis with kyphosis. This means her spine is so curved it is putting pressure on her heart and lungs, threatening to shut them down. But adding to this Kati also suffers from brittle bones, which challenge her small skeleton even further.
“Every day is a struggle,” Esther says, listing just a fraction of the daily tasks that inhibit her daughter. “She’s a lot smaller than the average six-year-old – she’s about the same size as a three to four-year-old.
“She can’t run, she can only walk − and it’s been a long journey to get her walking.
She can’t use knives and forks because her wrists are so flexible, so we really have to work hard at family dinner time.”
There was no indication to Esther and Kati’s other guardian, Suzen (49), that their darling girl was going to be in for such a tough journey ahead.
“It was a normal pregnancy. Nothing was picked up in any scans or anything, and we went full term with a normal birth,” Esther tells. “It wasn’t until the newborn hip check on day two at Palmerston North Hospital, when the medical staff went ‘wiggle wiggle’ to her hips and suddenly her hips and legs were way above her head – and that wasn’t normal.”
Since those uncertain early days, doctors discovered Kati was born without the normal cup and ball hip joint, resulting in her having two complete hip reconstructions. However, those surgeries also revealed Kati’s brittle bones, making further treatment life-threatening.
Now, even after working with geneticists in Wellington, medical staff and the family are still no closer to figuring out what condition Kati has.
“We’ve had her genetic results come back and there is no history of this gene or the malformation of this gene anywhere in the country’s
DNA database,” Esther says.
“The surgeons are grabbing parts of different syndromes and making a mush-up of it all. So she has the brittle bones and the lax joints but then there’s also the formation of her spine.
“We’re trying to get in touch with Boston Children’s Hospital. They are the leading spinal children’s hospital and they potentially may have seen this or some degree of this [before].”
In Boston, cutting-edge research could see Kati have access to a growth rod system, which would reduce the number of surgical procedures the little girl needs to endure. However, another surgery at Starship Children’s Hospital could see a medical team try to surgically straighten her spine, a risky move due to Kati’s brittle bones.
Answers are what the family needs, Esther declares, her voice cracking as she explains what’s at stake. “It’s about finding answers and getting the best possible care we can give our Kati. Unfortunately, time isn’t on our side.”
For the past six years, the family hasn’t asked for help − they now have no other option but to reach out.
“We’ve had virtually no financial support, and it’s just got to the point where we really need help. It all adds up; taxis to the airport, consultations, and a Skype consultation with Boston will cost nearly one thousand New Zealand dollars.”
Despite her immense struggle, Kati can’t help but smile as she gets home from school every day, Esther says.
“Her favourite thing is playing in the sandpit. To talk to her, and to be present with her, she’s the most magical personality and nothing is a problem to her. She just tackles it and does it, and to see that inner strength in her makes it better. I’m so full of pride every time I look at her.”