Who is Stacie Hunter?

Stacie is the third child and only daughter of Scott and Kathy Hunter. She was a full-term baby and met all of her motor milestones for the first year, sitting at 6 months and walking at 14 months. It became obvious that something was wrong around 15 months, when she acquired some autistic features and became withdrawn. The loss of purposeful hand use and handwringing were not noticed at the time, because Rett syndrome was not even named yet. By the age of two years she had lost the ten single words she had developed, and became very irritable. Stacie went through a number of misdiagnoses until finally, at the age of 10, she was diagnosed by Dr. Mary Coleman of Washington, D.C., who had heard about the news of Rett syndrome at a medical meeting in France. When we read the first English-language published report in 1984, we were astounded to see the similarities to Rett syndrome. This diagnosis was confirmed by Dr. Andreas Rett in 1985 and the International Rett Syndrome Association (better known as The Club You Never Wanted to Join) was born on our kitchen table.

The years from 2-7 were very difficult for Stacie and for us…there were some smiles but there were also lots of s creaming, self-abuse and withdrawal...and lots of anger and guilt on our parts that we couldn't figure it out faster and easier. For many years, Stacie was like a time bomb, ready to go off at any time and any place. We never knew when. We learned to always look for cover before it happened. We carried the unease with us everywhere, ready to react at a moment's notice -- to leave, turn around, duck out, leave the groceries in the cart, take her outside, take her inside, rock her in the rocking chair, turn up the music, turn the music off, give her Tylenol, take her for a car ride, give her something to eat or drink, walk her in the stroller or wheelchair, massage her feet and hands, try something else to eat or drink, give her Gas X, try to cuddle her, swathe her in a leaded blanket, strip her down to the diaper, rub her back, lie down close to her, leave her alone, and finally, put in earplugs, clean up the vomit, wait it out. And cry.

An Earthly Mission

I have a perfect vision of God looking at all of his angels gathered together in Heaven before they descend to life on Earth.  He tells them he has a special mission and he needs a volunteer.  It will be a very difficult life on Earth, but one that will fill a very unique and important purpose.  Stacie’s hand shoots up quickly and she says, “I can do that”.  God reminds her that it will be a life full of challenges, pain and difficulties; it will be a very hard life, but it will also be a life that touches others in an extraordinary way and this life will make a huge difference to many people.  Being the perfect little soul that she is, she says again, “I know I can do that.”  God nods gently with a full and loving smile and says, “I know you can. I will send you on this special mission, and when the challenge is too much and the pain too great, I will call you back home into My arms. You will make a difference.”

The night Stacie was born, I was awake all night dreaming about her perfect life -- how she would be a cheerleader, valedictorian, the first woman president! As she gets older and I face a possible future without her, I realize that when she leaves this earth, no one will remember the cheerleader or the valedictorian. But, they will remember Stacie Hunter forever -- how she touched them and showed the utmost courage and strength, how she showed them how to count their blessings and know that there is beauty in imperfection. I strive to be more like her every day.

Kathy Hunter

Throughout it all, there was anger for those who stared, resentment for those with typical children whose lives seemed so easy, sadness for our loss, bewilderment for how to go forward, and rage for the inability to change any of it.

At the same time there has been a lot of prayer of thanksgiving that we have been able to enjoy the good times and make the best of what were the difficult days. We have some battle scars, but we're still here to talk about it. I guess that makes us survivors. I sometimes think we all suffer from our own kind of post-stress disorder.

Now 34 years young, Stacie enjoys living at home with the family in Fort Washington, Maryland. She attends a day program provided by the ARC, where she has many devoted friends. She enjoys social gatherings, going to the movies, shopping, traveling and music. She still walks well and even runs and swims in water over her head. She has a few words and phrases, but communicates mostly with her beautiful brown eyes. She laughs out loud a lot, and seldom cries unless she is in pain.

Today, Stacie is the best she has ever been in her life. She has no pain issues and is comfortable, loves people and getting about town. She loves her day program where she is the princess and she loves living with us at home, where she is the queen. We count every day as a blessing because the memories of those not-so-good-days are so deep to the surface of our hearts. We have no idea if another challenge will come, but in the meantime, we enjoy our view from the mountaintop, even more spectacular because of what we have been through. You can't appreciate the view from the mountaintop unless you have lived in the valley.

Nothing about Rett syndrome is easy, but we have learned that Rett syndrome is not the worst thing that can happen to you. If you are now in a valley, I hope that just around the next corner, you will find a beautiful mountain view. You and your child deserve it.

One of the most miraculous blessings of Rett syndrome has been finding families who walk the same journey. They have enriched my life with the knowledge, insight, wit and the wisdom it takes to survive and thrive. That’s why I want to give back at RettHelp.org.

Kathy Hunter