Signs of weakness start when the boys are between 3 and 5 years of age (sometimes earlier). At first, the weakness is seen mostly in the legs and hips. The children may:

 

• Fall frequently
• Have trouble running as fast as their peers
• Have trouble climbing stairs
• Have trouble getting up from a chair
• Develop big calves
• Frequently walk on their toes and lean backwards to keep their balance

 

Eventually this weakness also makes walking more difficult and a wheelchair is needed. Gradually, all the muscles become very weak, including the muscles used for breathing and the heart.

 

There is a drug available in the US that will be of benefit to Vincent at an annual cost of €441,000 plus shipping costs every 13 weeks. Staff at Temple Street Children’s Hospital has agreed to administer the medication.  The family are working hard to get this medication for Vincent and your support is greatly appreciated.