News

Summer Nights on the Green - Bowl for ‘Archie’ Our Miracle Man

Source: Harbord Bowling Club
Posted: 6 Feb 2019
GREAT FRIENDS. GREAT FOOD. GREAT FUN. These are the key ingredients of Summer Nights on the Green, the lawn bowling tournament and fundraising event that brings people together to support ‘Archie’ who was born with a very rare condition called Anophthalmia causing him to be born with no eyes.

However, this was to be just the start of the families’ worries as the extent of Archie’s health problems began to be revealed. Shortly after Archie’s birth the genetics team diagnosed Archie with Sox2 Syndrome which affects 1:250000 births.

His specific mutation is so rare there is only one other recorded case in the world. It was at this point they knew their miracle man was incredibly strong to already have survived so much just to be here.

Our fundraising goal is to raise vital funds to purchase a brand new Volkswagen Comfortline Multivan fitted out to accommodate Archie in his wheelchair, and all his special needs equipment & family!

Everyone who meets Archie is instantly drawn to his gorgeous, contagious personality and smile.

So get a team together and join the lawn bowlers roll their way to raise vital funds for Archie!

Archie’s future prognosis is unknown and the journey since birth has understandably taken its toll on his family as complications associated with his syndrome have developed over time.

  • Archie is completely blind and has no light perception.
  • Archie has several brain abnormalities which have caused global development delays.
  • Archie has a mild/moderate neurosensory hearing loss requiring him to wear hearing aids.
  • Archie is entirely peg fed through his tummy due to silent aspiration (fluid leaking into the lungs).. As a result he does not eat anything orally through his mouth.
  • Archie has a rare form of epilepsy which could cause his heart rate to drop dangerously low. This could be fatal.
  • Archie has a severe motor delay. He is currently working on getting stronger, more consistent head control.
  • Since birth Archie has had over 15 separate hospital admissions with various respiratory infections.

To manage Archie’s complex medical history the family has had support from a huge multidisciplinary team consisting of over 20 medical and therapeutic specialists across Sydney.

As you can imagine with each new day comes a new battle, a new challenge to find the energy, courage and strength to organise, facilitate and manage the amount of care Archie requires and desperately needs.

They say it takes a village to bring up a child and for Archie this is most definitely true.

With your support our community can get together and raise vital funds to purchase a brand new Volkswagen Comfortline Multivan for Archie and his family.

Please spread the word and help us reach our fundraising goal!

For all team bookings and enquiries please contact Mish Miller at the Harbord Bowling Club on 9905 4849 or email


Summer Nights on the Green - Bowl for ‘Archie’ Our Miracle Man

Date:
Saturday 2 March 2019

Time:
4.00pm

Venue:
Harbord Bowling Club, Bennett Street, Curl Curl

Tickets:
Teams can have 4 people. *You must be 18+ to attend this event.
The event can accommodate 54 teams of 4 people per team. Any additional team friends or family that would like to attend must purchase a SOCIAL TICKET $25 per person.

Each team of 4 needs to REGISTER and pay an entry fee of $200 to attend the event whilst each team has a goal to raise the most funds in the lead up to the event to win a prize with all funds raised going to support ‘Archie’.

 
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