Pedalling parents put condition in spotlight

By Erika Venter


Yellow smiles on Saturday will dot the cycle line around the mountain as 27 local cyclists take to the road to raise awareness and funds for Midhirst toddler Kobe Uhlenberg.

Seven Stratford Parents Centre BLM feeds Cycle for a Smile teams and a solo rider will compete on Saturday in the Around the Mountain cycle race, supported by a number of friends, family and wellwishers.

Kobe was born on May 18, 2010 with a rare condition, Treachers Collins syndrome. His jaw and cheekbones were underdeveloped and he had no outer ears. A tracheostomy (hole in his throat) enables him to breath.

Tony Milham will be aiming for a fast time, but will double back to cross the finish line with the other teams - some doing the whole 148km and others a number of legs. Kobe's dad, Stephen, will also participate, but mum Cath and Kobe will encourage the riders from the sideline.

"Cath and Stephen are friends with a number of the members of the Stratford Parent Centre members. We invited Cath to come talk to us about Kobe's condition and we decided it would be nice to do something for them," says co-organiser Megan Dimock.

The Uhlenberg's suggested supporting the Ronald McDonald House which has been a great support for them, but Megan says they decided to raise money for Kobe himself.

"We chose cycling and the Around the Mountain race because we thought it would be a great way to get people out and about, and have some fun. A few of us had talked in the past about doing Around the Mountain and we thought it would be an awesome achievement."

The centre in the past has raised funds for a number of charities, including the New Zealand Breast Cancer Foundation.

Megan says they have fundraising events planned through the year for the centre - a non-profit organisation - but that it is "really nice to be able to do something for someone else rather than the centre".

Kobe already has had to endure many painful operations, the last big surgery in January 2012.

Cath says he was to have surgery this summer to correct the Choanal Atresia he has in his nose.

"But, as he has no soft palette and very little hard palette the specialists decided there was no point in doing the correcting to create a second airway in his nose until a palate can be constructed.

"So for now Kobe has to grow and wait for plans to be made for the next steps for him. This means his tracheostomy is his only clear and stable airway until things can be corrected.

She says the funds raised could go towards the intensive therapy Kobe now needs.

"Kobe's big focus now is to begin intensively working on his speech and language, learning to swallow, eat orally and to make more sound that will hopefully eventually in the future lead to talking. Achieving these will be major steps in Kobe's development."

A number of the Stratford Parents Centre BLM feeds Cycle for a Smile riders will on April 6 cycle the Taupo to Rotorua 100km Flier to further support the Uhlenbergs. If you want to join them, or want to donate to the cause, see the Cycle for a Smile Facebook page.

For more information on Kobe, see www.storyofkobe.blogspot.com

- Stratford Press

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