The Reddington Kids Live a Life of Pure Grace

This week’s Whiz Kids

Name: The Reddington Family

Sam is 12 - sixth grade

Ben is 10- fourth grade

Meg is 8 - third grade 

Grace is 6 - first grade 

Lily is 5 - Preschool  

Schools: Narragansett Pier and Elementary

Introduction: Tara and David Reddington are the blessed parents of five beautiful children.  Their oldest, Sam, is 12 years old and the youngest, Lily, is five.  Life for these two parents with five young children had its hectic moments but it was mostly filled with love and joy for their family. 

Five years ago, however, that all changed. Grace, their adorable 18-month old daughter, began to show signs that something in her development was not right.

The story shared on the Race For Grace website explains that Grace is now six years old and has been stricken by a devastating disease called Rett Syndrome. Once full of sparkle and boundless ability and energy, Grace is now struggling to cope with a failing body and mind.  

Grace began life as a perfectly normal and healthy baby girl. At 18 months old, her parents knew that something had started to go terribly wrong and all hopes of a normal and healthy life were stripped away from her when the diagnosis was confirmed in November 2006.

What is Rett Syndrome?
According to The Race for Grace website and Dr. Huda Y. Zoghbi, Rett Syndrome is a devastating neurological disorder seen almost exclusively in females. It is the leading genetic cause of severe impairments in girls.

Little girls with the disorder are born without any signs of the syndrome. By the age of 2, loss of language and motor skills are prominent. Breathing, digestion, heart rate and sleep patterns are dysfunctional. Scoliosis begins. Teeth grinding occurs. Seizures develop.

RTT leaves its victims profoundly disabled, requiring assistance with every aspect of daily living. These beautiful little girls, from the outside, look like perfect angels. However, RTT takes over and robs them of a healthy life.

Whiz Kid’s Key to Awesomeness: Grace’s battle with RTT has been life changing for not only her very strong and dedicated parents, but for her four siblings as well.  Those who know this extraordinary family personally can attest firsthand how amazing their unconditional love is for Grace and know their faith in God keeps them strong. 

Those who know them from a distance are not only touched by their tireless fight to find a cure for RTT and to keep Grace as comfortable as possible without receiving much respite at all, but are tremendously inspired by their loving commitment to one another as well. 

Thus thousands of people near and far have rallied together during the past four years to support the Race for Grace in prayer, in steadfast support, and by helping to raise more than $500,000 toward research for a cure for this horrific disease.

The Reddington children are a very large part of their family’s support system and are some of their sister Grace’s biggest cheerleaders. Though this difficult and heart-wrenching journey is unfathomable to some, this sibling group knows the true meaning of God-given acceptance and unlimited love and have each shared a loving thought about their precious sister, Gracie.

Sam: “Its hard to listen to her cry when she's upset but when she's happy, we all feel happy.”

Ben: “She's a blessing. She knows more than we think she knows and she knows me and the games I play with her.”

Meg: “She gives us all love and we feel joy from her.”

Lily: “I love her cuz she's special cuz she has Rett syndrome.”

Grace’s Quote, as told by her courageous mother: “Diddle diddle.” (The family thinks that means “I love you.”) 

This amazing family is not only an inspiration, they are a true example of what the essence of family is all about — unselfish acceptance and unrestricted patience and love. Above all, despite this awful disease afflicting their child and sister, they still know how to live a life filled with pure grace. 

This year, there will not be a Race for Grace Strollathon. However, on the eve of the "would be" Race for Grace this year, on May 27, there will be a live, luminary (candle lit) Rosary at 8 p.m. in the same parking lot () of the Race for Grace.  This event is not a fund-raiser, but a true faith raiser and it is called Grace for Gace.  

Any donations can be made online at Grace's website or mail to the Reddington home: 34 Old Pine Road, Narragansett, RI 02882.

*****

In closing, below is a letter that Tara Reddington recently sent out to all of Grace’s fans. 

Dear Grace Fans, 

First of all, thank you for increase in prayers for Grace and please don't stop yet! This winter has been a long one for Grace and my family.  Her recent hospitalization yielded some interesting finds but not a whole lot of what to do for her information.  In viewing her brain activity, it was observed that every time Grace moves, her movements (even slight) causes immediate electrical activity in the brain- like an epileptic discharge.  These continuous discharges seem to "back up" in Grace's brain leading to a full out overload and an explosion of screaming, torment and misery.  This cycle does not occur in "normal" brains nor with most girls with Rett Syndrome.  It is unique to Grace.  

Grace has always had unusual physical strength and ability for a girl with her diagnosis.  It is because of this strength and ability that she suffers.  Her brain is not capable of "driving" her body, therefore, sadly, her body drives her brain and the process for Grace is exhausting, painful and perpetual.   

What do we do about it?  Well, a cure would be nice but in the meantime, we are continuing to work to understand how we can introduce new meds, change her life and manage her days better in order for her to be comfortable. This is no small task and it's been 4-1/2 years of searching for a way to help her but we are not giving up.   

 Speaking of a cure... It is still reachable. Although there is no Strollathon this year (thank God!!), the Race for Grace is still an open fund and desperately in need of donations.  Research is continuing and it is aggressive.  Rett specialists all over, including Grace's doctor have conviction that it's not a matter of IF the cure will be found, it's a matter of WHEN.

Peace,

Tara