Karolina, or Karly, as we all call her, lights up a room with her smile and kind spirit. She has suffered much more than any child should ever have to go through, but even then, her happiness shines right through her.
Since the day she was born, she taught us the true meaning of happiness, love, and great strength. Although we know that we may never hear her speak, we know that there is truly an angel amongst us as we watch her flutter her wings. Karly has a tendency to bring our families closer together and has brought so much love to everyone. She makes everyone feel special and needed. She is such a strong and beautiful little girl that we are so proud of; for no matter the obstacle, she keeps trying. She has to work much harder than other children to do the same as them, but she keeps trying.
After Karly’s diagnosis, taking it a day at a time worked best for us. From that day on, we set new dreams to fit her life. We hoped that one day, she would walk, run and jump and that one day we could hear her tell us that she loves us. Karly is now six and she walks, runs in her own little way and jumps on her knees in the bed and trampoline. She does more than we ever imagined. She still can’t tell us that she loves us verbally, but she shows it every minute of the day with her beautiful smile, tight hugs and angelic laughter.
Karly has a PT, an OT, and a ST. Karly’s feeding problems are a daily struggle, but the whole family works very hard to make sure she gets all the nutrients she needs to avoid having to put her on a feeding tube.
No matter how hard our lives seem, though, all of our troubles and stress disappear when we see that angel smile at us. We all grieved over the fact that Karly would never be “normal”. It didn’t take long, though, for us to “shake it off” and realize that God didn’t send us an ordinary child, but an extraordinary one.
We struggled so much before our daughter was diagnosed with Angelman Syndrome. We now know that it would have been good for medical professionals to know what the different symptoms that my daughter had meant. It would have been helpful for us, as parents, to know that Angelman Syndrome even existed, and most of all, it would have been helpful if the medical professionals in the neonatal intensive care unit could have realized that our baby was “fussy” or “dramatic” because she was showing specific symptoms that are tied to children with Angelman Syndrome.
When Karly was diagnosed, we had no one to turn to, but our families and friends. Since then, we started networking with other Angelman families in the area. We understand each other and share information and ideas with each other on how to deal with the unique situations that arise with Angelman individuals.
Because of the lack of awareness and resources in our area, we formed The Angel Karly Foundation. This organization’s misson is to provide support to other Angelman families in South Texas and to spread awareness of this rare syndrome.