Wednesday, February 24, 2010

Rett Syndrome - it's not for wussies. **a little amended**

Rett Syndrome. Trust me, you don't want your children to have it.

My dear friend Heather has a daughter, age 2 1/2, who was recently diagnosed with Rett Syndrome. They battled with finding a diagnosis for a year, something more that "developmentally delayed," to no avail. When a therapist recommended getting her tested with a specific test for Rett's, my friend knew, but hoped against all that wasn't the case. The day they recieved the new was devastating. The death of the dreams they had for their daughter. It was a hard week.

But they are people of great hope. My friend is one of the best encouragers I know. She thinks on the positive and looks ahead, instead of wallowing. Well, not too much wallowing. ;) Plus they have a sweet, fiery, beautiful, smiley little girl in their lives. I'm guessing they couldn't imagine life without her.

  • Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. It's fairly rare anyway.

  • Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

  • Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

  • Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.
On February 24, THAT WOULD BE TODAY, and a host of others have collaborated to raise funds to help find treatments and a cure for this rare disorder. We hope that you will visit the International Rett Syndrome Foundation website at to learn more about Rett, and if you can, make a donation.
And I'm sorry, but I could not find a cute logo/image/button to put here, and supper needs to be made. I did find one to add to my sidebar. Check it out!

Here's some "Rett mommy blogs" I found, too:

1 comment:

  1. Thanks for sharing this great Rett Syndrome information with your firends and family - awareness is half the battle! Your blog came up on my google alerts about Rett Syndrome and I thought I would stop and say hello - I am Brooklyn's mommy :) If your friend needs ANYTHING have her stop by my blog and email me - us Rett mommies need each other - and our friends - thank you for being such a great friend to her!