Seven-year-old Meckenzie Oelofsen is a little girl with an exuberance for life that’s infectious. She touches everyone who is fortunate enough to meet her.
However, if a treatment or cure is not discovered for her condition, she is unlikely to live past early adulthood.
Her parents’ only wish is for their adorable little girl to grow old. But Sanfilippo Syndrome won’t allow it.
The whole Kidspot team was so touched by a story we covered recently about two brothers, Landon and Blake, who also have the condition. Devastatingly, Landon has passed away and his family know that Blake only has limited time as well. The boys inspired us to want to find out more about the children in Australia who are suffering from this devastating syndrome.
Meckenzie Oelofsen having fun with her mum Joanne
Meckenzie is one of only about 50 children in Australia who suffer from the serious degenerative condition that causes fatal brain damage.
Refusing to give up on their daughter, Joanne and Shaun Oelofsen are launching, together with the Sanfilippo Children’s Foundation, the Hope for Meckenzie campaign, and are kickstarting the fundraising blitz with an Eight Birthday Wishes appeal to help finance a clinical trial that could potentially save Meckenzie and other children just like her.
Meckenzie’s eight birthday wishes
Meckenzie turns eight on October 30 and has eight birthday wishes: life, hope, treatment, help, cure, awareness, donate and to grow old.
“If there is no treatment then our wish is that she at least remains the way she is,” Joanne said.
“Every birthday since she was diagnosed we celebrate that she hasn’t lost the ability to move or talk – it’s a blessing but that will eventually disappear.”
The almost eight-year-old girl has an infectious lust for life
There were no warning signs about Meckenzie having the condition until her first week of primary school and the teacher suggested she see a psychologist.
“The teacher said she couldn’t sit still or follow instruction – let alone grasp it, so we got her tested and her IQ was really low but even then we thought she would just need occupational and speech therapy,” she said.
“It was a massive shock – not expected at all because she speaks really well and that’s when most people pick up on it at that speech milestone around two years old.”
“No parent wants their child to go through this – you feel helpless and heartbroken – it’s truly devastating.”
Four years on, Meckenzie is at the same cognitive level but physically she is developing normally.
“She’s a social butterfly to the core – a compete extrovert – I’m quite an introvert so she does all of the socialising for me,” Joanne said.
“She’s generally very happy which makes us happy. If you have a conversation with her you will remember it – she’s quite unforgettable.”
Joanne doesn’t want any other parents to experience the same heartache
Joanne feels frightened at what is in store down the track when Meckenzie inevitably deteriorates.
“We will feel isolated from friends and society – there’s no denying it does happen,” she said.
“It’s not easy to take her out – she’s hard to manage because she is hyperactive – it’s very distressing.”
She doesn’t want any other parents to experience the same heartache.
“Even if it’s too late for Meckenzie - we hope the campaign can help other children in the future.
“No parent wants their child to go through this – you feel helpless and heartbroken – it’s truly devastating.”
How you can help:
Donate to the Hope for Meckenzie campaign
Like the Hope For Meckenzie Facebook page
Host a community fundraiser and spread the word about the devastating disease within your workplace, school or community group.
Sing Happy Birthday to Meckenzie and post to Facebook or Instagram using the following hashtags: #8birthdaywishes #hopeformeckenzie #sanfilippogoingglobal
