Hope for Jarvis – Help find a cure for FOP

Jarvis has recently been diagnosed with a rare genetic disorder called FOP – Fibrodysplasia Ossificans Progressiva.  This means that the muscles, tendons and ligaments in his body will progressively turn to bone the older he gets. Effectively he will grow a second skeleton. It is currently known as one of the rarest, most disabling genetic conditions known to medicine and affects 1 in 2 million people worldwide. It has no ethnic or religious pattern.

There have been 800 confirmed cases across the globe from an estimated 2500.  In the UK there is 45 known cases,  285 known cases in the United States and approximately  13 people in Australasia with this horrible disorder so while there are doctors in Australia contributing to research, the experts are overseas.

The information obtained from studying this disease will have far-reaching implications for the treatment of common disorders such as fractures, osteoporosis, hip replacement surgery and other forms of heterotopic ossification that occur in trauma and burn victims.

To read more about this disease click here  www.ifopa.org

Today, Jarvis is a gorgeous 2 ½ yr old boy who is full of life.  However Jarvis’ future holds a life time of physical challenges ahead. And that’s where we need your help.

At the moment there is no cure for FOP but they are close.  There is research happening in the US and UK that could help our son.

Please help us get Jarvis overseas to see the specialists and help us find a cure for FOP.

Read our latest newsletter here:

330 thoughts on “Hope for Jarvis – Help find a cure for FOP

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