Jette’s Story

This is a video shared by the Bosma family from Holland.  They are the proud parents of a beautiful daughter Jette, 19 months old, who is affected with Alstrom Syndrome. The first six months of her life she was hospitalized because of her cardiomyopathy and nystagmus, and other serious problems.  Jette has had a tough start to her life, but she is loved dearly and her family is hoping that things will continue to improve for precious little Jette.

Millie’s Story

This is a short film made by Michelle Hough, from the UK.  It is set to Portia’s Song from Friends and Heroes and features her wonderful daughter Millie and her story from birth to now. Millie was in intensive care at 5 1/2 weeks with heart failure and the road since has been a very rocky one. Millie has Alstrom Syndrome, she is registered blind and will continue to battle many severe medical conditions. She has and continues to inspire and amaze, the Hough family does not  know the future but they are not not wasting the present.