Families celebrate a win for their children in need
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Families celebrate a win for their children in need

Calwell parents Kymberlee and Phill Smith knew from her 20-week scan that their first baby was going to be born with a clubfoot, they just wouldn't know the severity until he was born.

 Phill and Kymberlee Smith with baby Keith

 Phill and Kymberlee Smith with baby Keith

Little Keith is now six months old and bravely enduring a range of treatments to address what is more formally known as Bilateral Congenital Talipes Equinovarus.

The common deformity affects one in 1000 babies, more likely boys, with feet twisted, leading to problems walking in the future.

Little Keith was assessed as having a medium to severe ailment, with both feet affected.

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Kymberlee said Keith had been put in a cast at one week, had tendon-release surgery in Sydney at nine weeks and then put into special boots attached to a bar for 23 out of 24 hours a day for three months.

He's now wears the special boots and bar for 16 hours a day.

Babies with clubfoot wear special boots fitted with a bar for 23 out of 24 hours initially

Babies with clubfoot wear special boots fitted with a bar for 23 out of 24 hours initially

He'll have to wear them until he is four.

And he is a little trooper.

"He really doesn't know any different,'' Kymberlee said.

"He loves to stand, sit up, kick his legs.''

The clubfoot was first picked up in Keith Ellson In utero at 20 weeks but its severity was not confirmed until he was born.

The clubfoot was first picked up in Keith Ellson In utero at 20 weeks but its severity was not confirmed until he was born.

Kymberlee, also president of the not-for-profit organisation Canberra and Surrounding Area Clubfoot Association, has lobbied the government for funding for the special equipment, which over the years can add up to $8000 per family.

That cost was above and beyond other necessary medical treatment including surgery, she said.

"Some families have literally not been able to pay bills or put food on the table so they could pay for this equipment and ensure their child could walk,'' she sa

Kymberlee said she was finally heard when she put the group's case to Brindabella Labor MLA Joy Burch during one of the politician's mobile office meet-and-greets.

The government has since agree to provide $40,000 a year to help families not covered by the NDIS to purchase boots and bars.

“After meeting with Ms Smith, I raised the issue with ACT Health Minister Meegan Fitzharris who has offered to provide cost-cover for those children born with clubfoot, but who do not fall under NDIS funding arrangements,'' Ms Burch said.

“This is a significant achievement for the local community. I would like to congratulate Kymberlee for her ongoing advocacy work in this area.''

Kymberlee said it would probably lead to a lending pool of equipment being established at the Canberra Hospital.

"I feel like I was definitely heard. Joy Burch has restored my faith in politicians,'' she said. "She's shown she will advocate for the little guy and, in this case, the really little guy.''