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Thursday, 25 April 2013

What's Wrong With Maxi? Yael Cohn's quest for her son Maxi. Please share.

A friend posted a link on her Facebook page, and asked her social media buddies to share. Several lines into the post I knew I had to get involved somehow.

I connected with the writer of the original post - Yael Cohen - and she filled me in.

Her story - and that of her son Maxi - is utterly heartbreaking. And hugely inspiring.

Here is Yael and Maxi's story:



Tears. And more tears.

More of a backgrounder on Maxi and Yael below, in Yael's own words. Here is a pic of mother and son:





And Maxi and his father Edan:



"Maximus is our beloved 2-year-old boy who lives at home with mum, dad and his 5-year-old brother Jacob.
Up until 9 months of age, Maximus was a happy, healthy boy. One day an eye tumour appeared, followed by several skin lesions.
By 18 months of age, Maxi had developed multiple brain lesions, high blood pressure, instability with his gross motor function and sudden, unexplained weight gain.
The past 17 months have been a struggle for Maximus, with seven general anaesthetics, several hospital stays, as well as specialist and hospital visits each week.  Yet there is still no definitive diagnosis.
We have created this site with the hope that someone will see this story and know something that we don’t.
We want to know: What’s wrong with Maxi?
We all know how dangerous Google doctoring can be, but I have read of cases where parents have discovered a diagnosis themselves by doing research and observing their child. This is because a parent has 24 hours a day to obsess and research a prognosis, whereas a specialist can only devote small amounts of time to one patient. So we thought the more people who see this story, the better chance Maximus has of coming closer to a diagnosis.
We also feel it’s important to share some of our struggles and joys with others as this may inspire, help or somehow make a difference for other parents going through similar situations.
Even though we live in Australia, we need to access the rest of the world to help us. We have tremendous resources in Australia, but sadly it’s never enough when your child remains undiagnosed and there is no apparent cure for what is a degenerative condition."
Here is a radio interview Yael did with Glenn Ridge. Yael is well known in the entertainment industry, having worked alongside Molly Meldrum for eons. Listen to the radio segment here:
I asked Yael some questions about the very difficult recent months. Like, how it felt for her to be a mother and carer for Maxi.
"The two are so linked I can't really separate the two."
I also asked Yael how it felt to go public, and why she decided to.
"It was a very difficult decision. But once you bite the bullet, there ain’t no looking back. I had an ego. I wnated to preserve my family, my ego, my profile. And then I thought, f*ck that! If I can help someone, help my son, I will.
"How dare I be so proud when I can speak the language, I’ve got the qualifications. I can do this!"
I ask Yael what her ultimate is in starting the site for Maxi.
"My goal is to share my story. So that people can share it to. I’m a frustrated mum that doesn’t wanna hear “We don’t know what to do about this.”
Indeed, visit Yael's site dedicated to Maxi and she is very clear about her three goals. In her own words, here they are:
Tell people

Please tell your friends – share this site! Do you know a doctor, pediatrician, scientist, chemist, neurologist? If not, people you know will. We need experts to diagnose our boy.

Please share this link and reach out to your networks. From your hairdresser to your mailman to your Facebook friends. Please forward this on to see if someone may help our baby boy. So far we haven’t found a specialist who can diagnose Maximus, but we believe someone out there will have the answer – help us find that person.

I also urge you to keep checking into Maxi’s blog – as I shall aim to post regularly on medical findings, etc.

Please email any suggestions to whatswrongwithmaxi@gmail.com. All ideas are welcome.
Create awareness
Maximus is one of many children around the world who are undiagnosed and, as a result, they are prone to falling through loopholes in the system. Without a diagnosis, there is little support available. I have learned:
  • Some diseases are so rare there are no tests yet invented to find them.
  • If, by miracle, a diagnosis is made, should an orphan drug be required, it can be very difficult to convince a pharmaceutical company to invest in a product that is not produced for the masses.
So whatever you can do within your community to support the cause of children with rare and undiagnosed conditions can also be a pathway to answers and cures.
Send Maxi cards and well wishes
To: Maximus
The Pines Post Office
PO BOX 3123
Doncaster East, Victoria 3108
Australia
You can follow Maxi and Yael's journey here

And you can contact Yael direct here: whatswrongwithmaxi@gmail.com

My question to you is: if you knew that by just sharing a link you could be helping someone, your fellow human being, why wouldn't you?

SO: please share this link with everyone you know. Thank you.

UPDATED: Maxi's story has now hit the front page of the Herald Sun (18/5/13). Click here for the story.

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