Trust in the Lord with all your heart and lean not on your understanding. In all your ways acknowledge Him and He will direct your path (Journey). Proverbs 3:5-6
The Journey begins: Anberlin Skye Winters was born August 29, 2007 just before midnight. Early the next morning she was diagnosed with pulmonary atresia. She was on her way by ambulance to Eggleston Children’s Hospital by mid morning. Within the next week she would have 3 heart catherizations and open heart surgery. She would finally go home on a feeding tube a month later. Today she still has a stiff right ventrical and a hole between the chambers of her heart.
Journey Down Denial:
Anberlin made some development milestones but missed many. Her lack of development was attributed to her heart procedures and health issues. As more milestones were missed, doctor’s mentioned things like Asperger’s, Autism, and Rett Syndrome of which Rett Syndrome was the scariest. After all the testing and screenings, Anberlin was diagnosed with Rett Syndrome at the University of Alabama –Birmingham. We could no longer remain in denial and we then knew the name of the giant that we faced.
Rett Syndrome Road: Rett Syndrome is a neurological disorder that is found in 1 in 10,000 or so girls. It is typically characterized by the loss of skills that were developing in children. Anberlin was learning to talk but today is non-verbal. Anberlin was learning to walk, completely stopped, but now walks with a gait that is usually seen in Rett Syndrome children. Anberlin used to feed herself but now has little purposeful use of her hands .
However, Anberlin is not defined because of what she cannot do. Anberlin speaks with her eyes, laughs from her heart, and is a magnet for people she meets. Anberlin loves music and specifically she loves Christian music. Her favorite artists are Sanctus Real, David Crowder Band, and Chris Tomlin. Anberlin loves to worship and often can hardly wait for worship to start at church. Anberlin is extremely sensitive to hurts and pains of others and often cries not for her situation but for the situations of those around her.
She really doesn't watch a lot of television but her favorite thing to watch is VeggieTales. Larry the Cucumber is her favorite character and The Pirates Who Don't Do Anything is her favorite show. It is amazing to see how often adults quote VeggieTales after viewing the episodes with Anberlin. It is also amazing to realize how often the creators of VeggieTales throw in things that children would never relate too but adults watching with the children will understand.
Road to Recovery: When Anberlin first began this journey we were told “there is no hope for Rett Syndrome”. We found out that is not true. The genetic cause of Rett Syndrome has been identified. Improvement and reversal of Rett Syndrome has been accomplished in laboratory animals, and human trials have begun.
There is HOPE and our personal belief is that we will see significant change in Anberlin’s life and those like her. Before Anberlin was diagnosed with Rett Syndrome, our prayer was that Anberlin and 999 other children like her would one day be free from the symptoms of whatever was causing her delays. We now know that giant is called Rett Syndrome and we believe that through medical research and/or the Hand of God, treatment and cure is possible and obtainable.
Join the Road Crew: A lot has been done regarding research and treatment for Rett Syndrome. Still Anberlin and other's like her still cannot talk, many still cannot walk, and most do not have purposeful use of her hands. However, we can talk and pray for them, we can walk for them, and we can use our hands to raise funds to advance research for them.
You can join the Anberlin Skye’s Road Crew by:
• Making a donation to fund research by giving to the International Rett Syndrome Foundation through First Giving at www.firstgiving.com/fundraiser/karenwinters/georgiastrollathon, or through donations given to team members before or at the event
• Continuing to pray.
• Joining us at the Georgia Strollathon for Rett Syndrome at Central City Park, Macon, Georgia on October 8, 2011 at 10:00 a.m.
Personal note: Most or you know that Anberlin lives with us (Wayne and Karen Winters) and she has always been in our home since coming home from the hospital. As Grandparents that love Anberlin there have been times when we were afraid and there have been times when things have just been hard. The really difficult times are few and most of the time is filled with joy. Anberlin is a blessing to us and to those around her. We are truly blessed to be on this journey with Anberlin and we thank God that He has chosen us to share this journey with this "Special Angel".
A special thank you is extended for all of you that have prayed and encouraged us on this road. God bless you.
Karen and Wayne Winters
Remember: Trust in the Lord with all your heart…..He will direct your Journey.
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