No hair for Neevie :)

Fundraising Goal $1,800.00

My Message

On June 14th 2011 my sister Tessa and her partner Ben gave birth to a very special baby girl, Onieviia Claire Potter- my first experience of being an aunty! Our family was overjoyed to welcome a precious new little life to the fold.

However Neevie's story did not proceed as we had hoped. From the moment she was born we saw looks of concern on the faces of the doctors and nurses assisting in Neevie's care. Neevie spent some time in the Neonatal Intensive Care Unit at the Women's and Children's Hospital and after some weeks the Paediatricians came to my sister, her partner and us as a family, and gave us a diagnosis. Neevie was diagnosed with Pontocerebellar Hypoplasia. It is a VERY rare genetic condition that could not have been anticipated.

She was blessed with a curious and cheeky spirit, however she struggled with a number of physical impairments. As a direct result of her condition she was unable to control her movements and therefore could not swallow in a co-ordinated way, so she was tube-fed. She had some likely limitations to her vision. Worst of all, Neevie suffered from tonic-clonic seizures which increased in frequency as she grew into a toddler.

Throughout this time, my sister rose to every challenge and showed herself to be one of the strongest, most loving and thoughtful mothers I have ever known. And there were many challenges. Neevie required frequent appointments with various practitioners- paediatric neurology, dietetics, physiotherapy, occupational therapy, nursing, palliative care and, of course, the unanticipated visits to hospital when the feeding tube got pulled out or Neevie needed emergency attention.

We were heartbroken to say our last goodbyes to Neevie on February 20th 2013. Neevie taught us so much and is still with all of us in different ways.

Two key supports that assisted Neevie were Novita and the WCH Palliative Care Team. As Neevie's daddy, Ben Potter, has already held a very successful fundraiser for Novita, we thought that the Women's and Children's Hospital was deserving of our gratitude.

So I'm going to do something a bit daring because Neevie (and Tessa) taught me about how to be brave. I'm going to shave my head in April in order to raise as much dough as I can for the WCH. We want to show our appreciation and love for other families experiencing something similar.

If you could find it in your heart and wallet, we would be so grateful for any donations. They go direct to the WCH Foundation :)

"If there ever comes a day when we can't be together, keep me in your heart. I'll stay there forever."- A.A. Milne (Winnie the Pooh)

Event Date
Feb 1, 2018 12:00 AM

My Team

%TeamName% is affiliated with %CorporateTeamName%

My Supporters (31)

Tara Naige donated $50.00
Apr 6, 2019 6:36 PM
Jan Rosecky donated $10.00
Apr 6, 2019 10:13 AM
Katrina Potter donated $50.00
Apr 5, 2019 5:45 AM
Ben Potter left a message
Apr 4, 2019 11:47 PM
Miss our baby girl x
Ben Potter donated $100.00
Apr 4, 2019 11:46 PM
Steven Valente donated $50.00
Apr 4, 2019 1:00 PM
Robyn left a message
Apr 4, 2019 7:45 AM
Bravo Kaelee!
Jagger Fine Foods donated $100.00
Apr 4, 2019 7:44 AM
Greg left a message
Apr 2, 2019 12:38 PM
Really impressed you are doing this, go you
Greg Hordacre donated $100.00
Apr 2, 2019 12:37 PM
Rick McKay donated $100.00
Apr 2, 2019 9:35 AM
Lotus Lounge left a message
Apr 2, 2019 12:34 AM
You might look hot with a shaved head .
Brett Stewart donated $50.00
Apr 2, 2019 12:33 AM
Nicola Richardson-Pearn donated $50.00
Apr 1, 2019 9:13 PM
Rosa Virgara left a message
Apr 1, 2019 7:20 PM
Dear kaelee and family, sending you lots of love that is a tragic thing to go through and no family should have to, i hope someone donates more and gets your goal xxx
Rosa Virgara donated $250.00
Apr 1, 2019 7:19 PM
Adam Spence donated $20.00
Mar 22, 2019 8:24 AM
Zack Plaquet donated $75.00
Mar 21, 2019 9:08 PM
Will Mckay donated $100.00
Mar 21, 2019 9:07 PM
Mick Ellis donated $20.00
Mar 21, 2019 8:50 PM
Paul . donated $100.00
Mar 21, 2019 8:48 PM
Josh Boorman donated $100.00
Mar 21, 2019 7:08 PM
Snow Hatzigiannis left a message
Mar 20, 2019 5:58 AM
Looking forward to the shave
Snow Hatzigiannis donated $40.00
Mar 20, 2019 5:57 AM
Ann-Louise xo left a message
Mar 19, 2019 3:21 PM
A very good cause. My donation includes Nana and Papa's contribution - and papa is keen to compare haircuts :)
Ann-Louise Hordacre donated $200.00
Mar 19, 2019 3:16 PM
Malcolm left a message
Mar 17, 2019 7:55 PM
As promised
Malcolm Campbell donated $25.00
Mar 17, 2019 7:55 PM
Christine Mckay left a message
Mar 10, 2019 7:32 PM
Yay, I’ve done it. Looking forward to the shave
Christine Mckay donated $100.00
Mar 10, 2019 7:31 PM
Tessa Mckay donated $35.00
Mar 9, 2019 4:49 PM