Our Motto With Angelman Syndrome? Just Keep Swimming!

March 18, 2015

Just keep swimming….Because Max is still smiling!

Max is a 13-year-old boy who loves horseback riding, going to the pool and watching movies with his family.

Angelman Syndrome is not taking away his love and enthusiasm for his brothers, friends, parents and teachers.

Max had bad days.Terrible days; multiple respiratory distress, seizures, intensive therapies to learn how to walk.  Currently there is no cure for Angelman syndrome but we must go on (keep swimming!)

Gratefully Max’s curiosity and imagination is the best booster to fight the challenges he is facing everyday. Max is one of the bravest people I ever met. For Max, obstacles are not the end of the story he just moves thru them so he can move on.

His energy is generated by food. Max is fed with therapeutic love; it is one of the most powerful treatments for any medical condition! Also called Ketogenic diet.

We don’t know what the future holds for us, but it is ok. We must enjoy every day, the same way Max is laughing and screaming when he see his school bus coming the morning.

Just because his life is full of love, hugs and smiles.


March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.

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