HEIDI-May Honess is one of a kind and not just because of her cheeky personality or expressive blue eyes.
Heidi-May (22 months) has a rare condition called micrognathia, which means her jaw has stopped growing.
“I knew from when she was born there was something wrong,” Heidi-May’s mum Belinda said.
“She had a huge double chin and had problems breastfeeding.”
Her mother’s instinct sent her to 16 different doctors – who diagnosed asthma and other issues.
She said it got to a point where she and husband Shane were taking turns staying awake to make sure she was alive.
In April, Heidi-May’s health deteriorated rapidly and, tired of local doctors ignoring the problem, Mrs Honess rushed her to Princess Margaret Hospital.
“She needed an urgent tracheostomy,” she said.
“Her airways had almost closed by then.”
Then a feeding peg was put into Heidi-May’s stomach because she could not eat solids.
Specialists believe Heidi-May is the only toddler in Australia with the condition.
They had to fly to the US to meet other specialists so they could learn how to fix her jaw and open her airways.
“We were told if she had been looked at from day one, she wouldn’t be as bad,” Mrs Honess said.
Heidi-May will face the first of many jaw surgeries in July where her jawbone will be broken in two places and bolts will be attached. Her jaw will be wired shut.
Mrs Honess is expected to turn these bolts twice a day to stimulate bone growth to increase the size of Heidi-May’s jaw.
Mrs Honess changes Heidi-May’s tracheostomy tape once a day, the tracheostomy needs suctioning and once a week it needs to be taken out and replaced.
Three times a day feeds through a peg mean Heidi-May needs to be distracted from pulling at the tubes, through which she is nourish.
Heidi-May cannot be left alone – if water or even sand enters the trachy it can block her airways.
Despite having two young children – daughter Isabelle is eight months and still breastfed – the family does not qualify for disability funding.
A tracheostomy is not considered a disability – nor is Heidi-May’s condition.
“We desperately need help,” Mrs Honess said.
“This is beyond a joke; we’re trying to find support, not just for right now but the future as well.”
After approaching multiple respite agencies – to be told there was no funding for them or that without a disability Heidi-May did not qualify – Hannah’s House provided a registered nurse for three days a week.
Mrs Honess dreads the two days she is left alone.
She is pleading for Heidi-May’s case to be considered by the Disability Services Commission.
“We can’t pay our mortgage, let alone bills at the moment,” she said.
“Cold temperatures affect Heidi-May’s breathing so we have to keep the heater on, which is another cost.
“We would like to pay nurses to help me. If we got some government support, it wouldn’t be as stressful.”
Mr Honess works full time but has had to take leave to stay with his daughter, which put further strain on family finances.
She would also like to address the rudeness some people show when she takes Heidi-May for outings.
“Everyone really stares and it gets to the point where it is quite rude,” she said.
“We’d much rather people ask or talk about it.
“You can still smile at her, she’s just a normal baby.”
A Disability Commission spokesperson said to be considered eligible for Commission-provided and funded supports and services, individuals must meet the eligibility criteria, as outlined in Commission policy.
“This is also consistent with National Disability Insurance Scheme (NDIS) eligibility guidelines and policy,” she said.
“Information and advocacy support can be provided to those who do not meet this criteria.
“There is no record of this family having gone through the eligibility process, but should they choose to test their eligibility for Commission services, they can contact their nearest DSC office.”
Halo Team Mandurah is taking donations for the Honess family.
Go to https://www.facebook.com/halomandurah/ to make a donation.