health

How space travel will help cure our son

When Massimo Damiani was a baby he hit every milestone perfectly. He started crawling, pulling himself up into standing position and trying to walk. He loved learning to swim.

Then it all stopped.

Just before he turned one, Massimo started having trouble sitting and when he'd try to pull himself up into standing position he seemed to have lost his leg strength and couldn't do it. He'd cry in frustration. He started having trouble with balance in general and kept on thrusting his head backwards.

Stephen and Massimo, now 5

His parents Sally and Stephen were concerned. They took their son to the family doctor in Melbourne who was at a loss to explain Massimo's childhood illness.

Massimo was tested for everything doctors could think of but it all came back negative. Meantime his condition continued to deteriorate. He had trouble eating and drinking. He'd choke often.

His parents came to terms with the fact they might lose their son before his second birthday. Doctors eventually diagnosed him with neurological disorder but the condition was so rare it didn't have a name. The problem was that without a proper diagnosis his condition couldn't be treated.

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Stephen and his wife decided to have genetic testing done. He, his wife and Massimo had their genome sequence mapped. The only problem was they needed to find a doctor qualified to read the data and hopefully discover just what Massimo was suffering from.

That's when they met Doctor Ryan Taft at the University of Queensland's Institute for Molecular Bioscience who used genome sequencing to discover that then three-year-old Massimo was suffering from a previously unknown congenital disease.

By this stage Massimo was mostly immobile and couldn't talk. Meantime his twin brothers Leonardo and Marco were normal, healthy kids.

These days Massimo's disease is being successfully treated but much more needs to be done to help him improve enough to enjoy a proper life and his parents are determined to get him there.

They are now working with a team of doctors to develop a therapy to help Massimo's body start making myelin again to regain some of the skills he has lost.

However this kind of research is expensive. The family now spend every moment possible fundraising to help treat the disease. They have launched the Mission Massimo Foundation  and are selling future tickets to travel in space.

The family meets Kaley Cuoco from The Big Bang Theory

Stephen Damiani, who is a huge fan of both space and science, purchased a ticket to a future space flight, the Space Expedition Corporation Lynx Mark 2 worth $100,000. He is now raffling off this ticket to help raise money into Massimo's condition. Massimo is now 5.

To enter the raffle head to the Massimo Damiani fundraiser page.  The family hopes to find a cure for this and other connective tissue diseases such as Multiple Sclerosis. Seeing as they've already helped doctors diagnose and treat rare conditions, we have no doubt they'll achieve their goal.

Already the family has traveled the world meeting celebrities and helping to raise awareness of the condition.

Have you ever been faced with doctors who couldn't diagnose your child's condition?

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