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Dwarfism awareness month highlights Finley’s condition

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THE mum of a little boy with achondroplasia, a form of dwarfism, has founded an awareness project on his condition for the Isle of Man.

Kristy Canipa, mum to Finley, who is almost two, has set up Finley’s Footsteps to help the public understand more about dwarfism.

She has organised a series of Dwarfism Awareness events this month, Dwarfism Awareness Month, which will not only help increase the public’s knowledge but will raise money for the Dwarf Sports Association and Rebecca House Children’s Hospice.

Kristy, who lives in Westminster Terrace, Douglas, with Finley, her husband Juan and daughters Lucy and Emily Todd, 10 and 12, is maintaining a sporting theme throughout her events, drawing on the recent successes at the London 2012 Paralympics.

In particular, she and her family are keen to highlight the successes of 17-year-old swimmer Ellie Simmonds, who took two golds in the paralympic pool. Ellie also has achondroplasia and is a patron of the Dwarf Sports Association.

Trustee of the DSA Penny Dean will visit the island to give talks about her life and involvement with sport.

And over the Dwarfism Awareness event, there will be a series of talks, bag packs, coffee mornings, public collections, dress down days, displays and fundraisers. People will be encouraged to Go Green, the colour theme for Dwarfism Awareness Month.

Throughout the month special Jaime’s Kitchen sandwiches are being sold through Shoprite and Spar stores. 10p from the proceeds of each sale will go to Rebecca House and the DSA, matched by 10p from the store, making 20p in total for each sandwich sold.

The programme of events includes having an information stand at Noble’s Hospital on Friday, a bag packing event all day at Shoprite, Douglas, on Saturday, and talks to students at Ballakermeen High School on October 25.

In addition there will be a presentation in the Gough Ritchie Education Suite at Hospice on October 26, a coffee morning at Ballakermeen High School the following day, as well as a question and answer session at Noble’s Hospital in the foyer, also on Saturday.

For full details of all of the events, keep a close eye on the Finley’s Footsteps page on Facebook, which also includes Kristy’s own account of her family’s journey from Finley’s diagnosis to the campaign.

Finley’s Footsteps facebook community page.

Kristy is passionate about both her son and the subject of dwarfism.

She came up with the concept of the Dwarfism Awareness event herself and has enlisted the help of numerous family and friends in its execution.

She said: ‘Finley is perfect in every way, maybe different from the idealistic image people wish for but, in fact, something far more special, with far more presence, far more than the comedy figure that’s become a tireless and unrealistic picture.

‘We have found far greater empathy and strength of character and determination, far better than anything I could have wished for.

‘Although living with dwarfism has changed the course of our life, without doubt it has changed our life for the better and we have this immense pride as our son reshapes the perceptions of hundreds of people.’


 
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Saturday 18 May 2013

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