My Perfect Family: Ebony Sinclair
Ebony Sinclair is a go-getter born with Achondroplasia, a form of dwarfism. Ebony and her husband Ge...
My Perfect Family:Fragile X
To discover you’re the carrier of the genetic condition Fragile X only after your children are born ...
My Perfect Family: Nash Jones
The Jones family’s life changed forever when their youngest boy Nash was diagnosed with a rare condi...
My Perfect Family
Exploring the day today lives of tight-knit families, who are managing complex or unusual conditions...
My Perfect Family: Lydia Golding
6-year-old Lydia Golding was born with her right femur bone significantly shorter than her left. In...
My Perfect Family: Hatty
Hatty Walton is a 13-year-old star on the show Mystic, who lives with a hearing impairment. Hatty ho...
My Perfect Family: Twins
For young mum Nikki Stokes being a mother of five means there's never a dull moment. With non-verbal...
My Perfect Family: Georgia Heard
Georgia Heard thought she had parenting all mapped out. But when the younger of her two boys was di...
My Perfect Family: Mahia & Tipene
Mahia and Tipene Stephens were born with a congenital eye disorder, causing their eyesight to deteri...
My Perfect Family: Harper Ahern
Since being diagnosed with Muscular Dystrophy at age four, 10-year-old surfer Harper and his family ...
My Perfect Family: Meet the Asners
They call themselves the "The Brady Bunch of Autism". Descendants of Hollywood royalty, Matt and Nav...
My Perfect Family: Kat and Ella
Kat Yearbury is a mother to two-year-old Frankie and six-year-old Ella, who has Cerebral Palsy and E...
My Perfect Family: The Priestleys
Four of the six Priestley family members live with Autism. Because they’re able to function at a hig...
My Perfect Family: No Respite
Life during a pandemic is a challenge for all parents with kids at home. But for parents whose child...
My Perfect Family: Kim Preston
Raising three boys is always a big task, especially when two of them have severe autism. But Kim Pre...
My Perfect Family: Zoe
Zoe Tate lives with Wolf-Hirschhorn Syndrome, a genetic disorder affecting her appearance, growth an...
My Perfect Family: Hunter
Hunter McGregor is a passionate gamer, a design school graduate, and he runs a B&B with his mum, Roi...
My Perfect Family: Jaxon Woolley
15 year old Jaxon Woolley is already blitzing through para-sprinting records. An athlete to watch, J...
My Perfect Family: Max and Grace
Siblings Max and Grace are off on a road trip to Queenstown, putting Max's independence to the test ...
My Perfect Family: Friedreich's Ataxia
Preparing for a 30th birthday is a big deal in the Boon family. Three out of five siblings live with...
My Perfect Family: Courtenay
Demar Gear was just five months old when she contracted meningitis, leaving her unable to walk or ta...
My Perfect Family: Tara Aumalesulu
Nine year old Tara is launching her very first album, Pele O Lo’u Fatu. Living with visual impairmen...
My Perfect Family: The Fergusons Part 2
Last week we met the Fergusons, a family of five who communicate using NZSL. Here, we join the Fergu...
My Perfect Family: OCD
For two teenage sisters living with OCD, the world can often be an uncertain and scary place. In the...
My Perfect Family: Grace Payne
Grace Payne is a powerlifter who has competed in the Special Olympics as an autistic athlete. Now, 2...
Brothers and Sisters
The unique perspective of those closest to us, our brothers and sisters.
My Perfect Family: Creative Clan
Ranger Ashurst is eleven and needs regular injections to control his Chrone's disease, his eight yea...
My Perfect Family: Tri Rugby
For members of Christchurch's Tri Rugby team - who live with intellectual disabilities - rugby is mo...
My Perfect Family: Bold As Brass
As New Zealanders living in Australia, Abbi and Morgan Brass received no government support when the...
My Perfect Family: The Fergusons Part 1
The Fergusons are an average family of five; they have fun, they fight, but mostly they get along. ...
My Perfect Family: Jo & Leon
Young doctor Jo Scott’s career was on the rise when a brain haemorrhage changed her life. Seven year...
My Perfect Family: Perrones
Young anime artist Bee Perrone lives with the rare condition, Ivemark Syndrome. Understanding this i...
My Perfect Family: Little People
The 50th annual conference for Little People of New Zealand (LPNZ) is fast approaching, and 27-year-...
My Perfect Family: Southland Lockdown
Awards Night is the highlight of the social calendar for a vulnerable workforce at Southland Disabil...
My Perfect Family: CDKL5
Learning your new baby has a complex rare condition is life altering. Three Mums connect over their ...
My Perfect Family: Malaena Cariño
12-year-old Malaena Cariño has a rare genetic form of epilepsy. Her whānau have exhausted most treat...
My Perfect Family: Martine
Blind since birth, Martine Able-Williamson is now a global leader in the blind community. In this i...
My Perfect Family: Cystic Sisters
Kristy and Nikki are sisters and young mums who bring smiles to the faces of strangers by doing surp...
My Perfect Family: Sam and Jason
Sam lost her sight as a baby due to meningitis, and her husband Jason has limited vision due to a ge...
My Perfect Family: Alex
Performance is in the Walsh family’s DNA. When their youngest son Alex was born with Down syndrome, ...
My Perfect Family: Tiffiney Perry
Always an active person, Tiffiney Perry continued participating in sports and achieving success afte...
My Perfect Family: Family Man Graeme
When Graeme Porter was diagnosed with an intellectual disability as a child no one expected him to r...
My Perfect Family: Scruff's Bunch
Kim Preston (Scruff) reckon's she'll be caring for her three adult sons with Autism until she 'carks...
My Perfect Family: Candle Dad
Raising four children alone is a challenge - more so, when two have Down Syndrome. Tony Sykes rose t...
My Perfect Family: Southland
Southland Disability Enterprises employs over 80 people who live with a disability. For Mary-Ellen J...
My Perfect Family: Melody
Within just one year Melody entirely lost her vision, gave birth to her first child, and left her ho...
My Perfect Family: Welcome Home Stevie
Murray and Janine's son Steven was a gentle boy with autism. 18 months ago he left their house with ...
Ella is a sassy, cheeky, independent six-year-old but having cerebral palsy, hydrocephalus and epilepsy means life for mum, Kat, is more intense than most.
Having already experienced tragedy during her first pregnancy, Kat was closely monitored with Ella in the womb and monitored closely. But when she was born prematurely at 25 weeks, Ella had a brain bleed, which resulted in cerebral palsy and hydrocephalus.
“She’s fragile and totally reliant on all of this medical intervention to help her survive,” says Kat, explaining that in her six years, Ella has had 23 surgeries and is still in and out of hospital at least once a month for a check-up, or in the emergency room with a seizure.
“Hydrocephalus is known as water on the brain,” says Kat, “after Ella’s brain bleed, the clot blocked up the plumbing in her brain, and she developed hydrocephalus, which without intervention she would die. So they put a shunt in, which drains the fluid out into her abdomen and then the body naturally absorbs it.”
With the addition of son, Frankie in 2016, life in the Yearbury family is full-on. Though Frankie was born without any complications, Kat says she was “absolutely terrified the entire pregnancy. He’s my ray of sunshine, but I feel so guilty because he always comes second.”
Through all the love and support Kat offers her children, she does know how essential it is to make time to take care of herself. She is studying for her PhD in Arts as a Tool for Social Change, but says she has had so many suspensions because of Ella’s ongoing healthcare, that she’s still not graduated despite, having enrolled when she was pregnant with Ella in 2012.
Having the children’s Great Grandmother, Helena, live with Kat and the children is a massive help with the daily routine, and though Kat is separated from the children’s father Brett, he is always on hand with much-needed help. “Ella really misses him,” says Kat ‘he’s our family, so knows the rhythm and knows what’s expected and needed. He’s awesome with the kids.”
Ella has been attending Number 28 Early Childhood Centre since she was two and a half. “They’re incredible,” says Kat, “they’re hugely inclusive and have been such a huge support.”
But the realities of life’s situation mean Kat must always be nearby. Setting up her study room next door to the childcare centre, means Kat is able to be on call for Ella, and is often the first responder when an ambulance is required in case of a seizure.
“I’ve got a lot of practice to deal with it on the spot, it’s afterwards I just fall apart.” Kat runs on adrenaline and knows how to look after her daughter but has had some trouble looking after herself.
But despite all the challenges, Kat counts herself lucky to have Ella. Though she admits she is constantly worrying; “If something happened to her that was preventable,” Kat says, thinking of losing her beautiful girl, “that’s why I can’t really rest.”
Living with a daughter who relies on her so much has made Kat appreciate the little things in life. Kat is immensely proud of Ella and hopes her growing independence will continue to flourish into the future.
An Anxious World: Children Part 2
Despite being only weeks old when the Christchurch earthquake forced her family from their home, eig...
An Anxious World: Children Part 1
Anxiety rates in NZ children are skyrocketing with the number of diagnosed cases more than doubling ...
Kids with Disabilities: Winnie
Winnie is a gutsy nine-year-old who gives everything a go. She usually gets around in a wheelchair b...
Kids with Disabilities: Luke
Luke has Down syndrome and is one of the most compassionate and funniest nine-year-olds in Canterbur...
Kids with Disabilities: Destiny
Destiny is an eight-year-old with cerebral palsy. In her own words: ‘CP is a thing in the legs, the ...
Kids with Disabilities: Destiny
Destiny is an eight-year-old with cerebral palsy. In her own words: ‘CP is a thing in the legs, the ...
Kids with Disabilities: Harper
Harper is six years old and full of life! Despite some health challenges, he gives everything a go a...
Love Is Blind: Tim & Helen
Tim was a professional athlete with the Wheel Blacks and didn't want a girlfriend. But when Helen he...
Iziyah: Kids with Disabilities
"Sometimes I'm the same and sometimes I'm a bit different." Iziyah deals with some unique medical i...
Being Me: Juanita Willems
Pre-Christmas Juanita Willems is flat out, collecting, wrapping and distributing presents for foste...
My Perfect Family: Fragile X
Discovering you are the carrier of genetic condition Fragile X only after your children are born is ...
