TAZEWELL—He’s a little boy who loves swimming in the pool and being outdoors. He is fascinated by nature and has a smile that can light up a room, but this little boy has not had it easy.

Noah Hayes was diagnosed with a rare genetic disorder called Angelman Syndrome (AS) when he was only 13 months old. Due to the disease, Noah has spent most of his life physically limited unable to walk or speak, but that doesn’t get him down.

According to his parents, Ron and Jeannie Hayes, Noah has a joy for life and a positive attitude that can be seen through the constant smile on his face.

Recently that positive attitude paired with a little hard work has paid off and Noah has reached a new milestone in his life. He is beginning to walk on his own.

“He can take about 40 steps on his own without assistance,” said his mother. “Hopefully by summer he will be going everywhere.”

Individuals such as Noah who have AS typically cannot walk, cannot speak, are cognitively delayed, have seizures, a sleep disorder, feeding problems and other inhibiting characteristics. The disease is commonly difficult for both the individual and parents to deal with.

In Noah’s case, his parents see the disease as a blessing. “After the initial diagnosis, Ron and I had a hard time dealing with the fact that our child would have to cope with such a condition,” said Jeannie, “but over time we learned so much from Noah.”

She added, “He has taught us to look at things so much differently. He has taught us to laugh at the small things and appreciate things we took for granted before.”

Jeannie said now her family realizes how blessed they are that God chose them as parents for Noah. “ Our lives have a challenging path, but a rewarding one,” she said. “He is perfection to us—a sweet, innocent, happy little boy.”

As a final comment Ron and Jeannie said, “Noah is perfection to us—a sweet, innocent, happy boy. We look forward to seeing the man he will become and spending the rest of our lives seeing his contagious grin and knowing that Noah will never be ‘too old’ to hug Mommy or Daddy and never be ‘too old’ to laugh and play.”

Noah is the son of Ron and Jeannie Hayes of Tazewell, Tenn. They are both employed by Claiborne County Hospital. Noah has four siblings, Kendra, Josh, Amber, and Sean. He attends Springdale Elementary where he is in the second grade.

Noah battles daily with his disease and receives Occupational Therapy, Physical Therapy, and Speech Therapy. He also gets wonderful support from his school aide Linda Harris.

The current goals for Noah include being able to communicate his needs and wants and being able to walk completely unassisted. His family is also currently trying to sell their home as is it not set up to meet Noah’s needs because of two sets of stairs. They hope to build a home in the near future without stairs in order for the house to be more functional for Noah.

For more information on Angelman Syndrome, please visit the website at www.angelman.org.

Parents Letter to Noah

This is our little note to Noah:

We can only imagine what it is like living in your world. A world where you cannot talk to communicate your wants, needs, pains, etc. You deal with seizures on a daily basis and your mind and body does not allow you to be full rested at night so your attention span is limited the next day. On the other side, you marvel at your surroundings and greet everyone with a smile and perhaps a giggle. You enjoy the simplest things in life and you are able to see the wonders that God has placed on the earth and revel in it’s magnificence. Your biggest joy is getting to play in water and swimming in the pool.

The smile on your face allows the world to see you happy and content with what you were given which are limitations that keep you totally dependent upon those around you. Your desire to explore and fascination with nature such as the outdoors and particularly water keep us constantly on our toes. However, with that desire comes the spirit to persevere. You have overcome so many obstacles...your most recent one is you have started to walk some independently…we are so proud. You have been able to function in a world not set up to meet your needs. You energetically travel the hallways of Springdale School greeting peers and teachers alike with a bubbly laugh that could not be ignored. You have touched so many lives we may never know what kind of impact you’ve had. You have made many look within themselves to search for why they were placed here. Even with your limitations, you are still able to open that door. A door that hides what God has placed within each and everyone of us…love and compassion. You have kept us grounded and focused on the important things in life…we had to stop thinking about how different it would be if you could do this or that. Your father and I would love to take away all the suffering you have endured but with your ailment comes a peace about the family we have become and your miraculous ability to change people for the better. We can’t imagine having a greater gift than that. If it was given to you from God and God chose us as a family to care for you so your gift can be spread to everyone that comes in contact with you! What a responsibility, what a joy, what a gift…our true angel!