Rett Syndrome Picnic & Fundraiser

[robertmola]

Thank You Very Much For Posting The Video I Have Been Doing Volunteer Work AT A School For Children With Special Needs Since 1998 In 2008  A Girl Named Ruby Started At The School She As Rett Syndrome I Really Enjoy Working With Her

Ruby Brings A Lot Of Joy Into My Life

Robert

[Donsshack]

Holly has classic RS and is now 33. She's been a quad for 20+ years. She's been g-tube fed for 10+ years. She gag-pukes from reflux. We've changed over 36,000 diapers. She's had many thousands of seziures. She's taken many gallons of meds, had many docs, tests, and therapies. She's been hospitalised hundreds of times. She's had many wheelchairs. My back hurts. I can't remember the last time she talked. She used to click her fingers. About all she can do now is cry, moan and especially smile. :)

[jonasluvr4evr]

My little sister has RETT.

I hope everyday for a cure.

[mariagh48]

My sweet niece Gina is l2 years old and I pray for a cure for her and all girls. God bless them all. She is an angel. Her mother needs our prayers too.

[joanielovesjazz]

God Bless you all. Thank you so much for posting this. Two specialists believe this is what my 13 years old has, and we are waiting for the Neurologist. She was born a genius, and now is losing her ability to walk before our very eyes. The fact of sudden death in sleep as the leading cause of death in RS terrifies me. Time for another baby monitor. I will pray for all of you. (Canada)

[Donsshack]

I remember Holly doing math at age 4, she loved numbers. She was very socialable and talked your ears off. she was a little stinker too. Her seziures started at age four. She used to have blackouts and would fall and bang her head sometimes, or her face would crash into her food, even with a helmet. In spite of meds, she had those agonising seziures. Holly went through hell, and we felt so alone and helpless at times, as if anyone really cared, yes the anger. You'll learn a lot from nurses.

[ch4rli3]

My Daughter gives me strength when I'm weak...I really pray every day to God for the cure of this syndrome. Her name is Fernanda and she's 2 years old. I Love her with all my heart. God Bless every people helping to find the cure.

Carlos Gamboa

Mexico

[beckyhmn]

Bless your heart Carlos.. I pray that they find a cure for your daughter and all of the other children. Stay strong God is with you!