Naperville walk supports Angelman Syndrome Foundation

Any one of the symptoms almost could be brushed aside.

Together, they could be mistaken for a variety of disorders, from autism to epilepsy.

But Angelman Syndrome is a distinct neurogenetic disorder affecting about one in 15,000 American children. Their development is delayed, they don't speak or they use far fewer words than they understand. Their balance can be unsteady, their movements quick and jerky. They may suffer sleep disturbances or seizures, along with a host of other traits.

When it comes, the diagnosis can surprise parents who likely haven't heard of Angelman Syndrome before. They may have been expecting a diagnosis of autism, which has a much greater incidence of one or two children per 1,000, or as high as 11 children per 1,000 when you include autism spectrum disorders.

It's then that parents turn to the Angelman Syndrome Foundation for information, for support, for community.

The foundation, based in Aurora, funds research into the disorder and serves as a resource for families as they care for and raise their “Angels.”

A series of walks in 29 cities nationwide today will raise money for the foundation and its work while raising awareness of Angelman Syndrome.

At one of those walks eight years ago, the Geraghty family first came to terms with what Angelman Syndrome would mean for their daughter Grace. Just a few months after her diagnosis, the family decided to join the Naperville walk, wanting to take action on Grace's behalf but unsure of what they'd learn about older children with the disorder.

What they found was a community of families who treasure the other ways Angelman Syndrome expresses itself in children — their broad smiles, their infectious laughter, their desire to hug and be close.

The family, from LaGrange Park, organized this year's walk to offer other families the kind of support and encouragement they felt at their first walk.

Today, Sue Geraghty tells us more about life with Grace, her Angel.

Our family has been blessed with its very own Angel. Our daughter Grace is a sweet, happy, extremely loving 9-year-old girl who was diagnosed with Angelman Syndrome in January 2003 when she was just 1½ years old.

Angelman Syndrome is a neurogenetic disorder characterized by developmental delay, lack of speech, sleep disturbance, walking and balance disorders and the potential for seizures.

Our lives were turned upside down upon receiving Grace's diagnosis, and one of the first things we did was contact the Angelman Syndrome Foundation for support. It was somewhat comforting to know we were not alone, and the foundation was able to answer many of the questions we had about life with an Angel.

Yes, it is difficult knowing that Grace may not have the same opportunities as her three sisters — life on her own, a husband, a family. Also, it's difficult knowing Grace will need lifelong care and hoping we are able to provide that for her.

However, although life with an Angel is challenging on a daily basis, Grace is a ray of sunshine on a bad day. Her smile and strong hugs are powerful enough to alter even the worst day or mood. Her wants are simple and her ability to communicate without words is fascinating. Sure, Grace is not able to participate in some of the activities her sisters participate in, but she loves her SEASPAR swimming class, her therapeutic horseback riding lessons at the Hanson Center and her Challenger Baseball games.

We have learned to try not to take basic things for granted — the ability to talk or even to dress ourselves. Having an Angel really gets you to appreciate the simple things in life and know that God would not give you more than you can handle. There is a reason our family has been blessed with Grace.

The 2011 Angelman Syndrome Foundation Walk marks the ninth walk for Grace and our family and friends. Like many families receiving that initial diagnosis, we had not heard of Angelman Syndrome before and were hesitant to attend that first walk. We knew we would be seeing our future by meeting other families and seeing other children with Angelman Syndrome.

However, we did attend that walk and were so comforted by the atmosphere and support of all those there. Grace was not yet walking but was thrilled to be surrounded by all the people. Grace was able to walk at the following year's event and now is running; there is no keeping up with her!

Won't you consider joining us today at the ASF annual national walkathon in Naperville? As a family, our goal is to provide the best possible future for Grace and we feel the ASF plays an important role in that.

To register for the walk or simply to find more information about Angelman Syndrome, visit angelman.org. To support our family as we walk, visit our fundraising page at www.angelman.org/graciesgang.

Thank you.

If you go

<b><b>What:</b></b> Angelman Syndrome Foundation National Walk

<b>When:</b> Registration begins at 8 a.m., walk begins at 9 a.m. today

<b>Where:</b> Word of Life Lutheran Church, 879 Tudor Road, Naperville

<b>Cost:</b>Donations accepted

<b>Donate to Gracie's Gang: </b>www.angelman.org/graciesgang

<b>Info:</b> angelman.org