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Life with Trisomy 21: Ally’s Story

By Margaret, Ally’s Mom

As we approach World Down Syndrome Day on March 21st, we were asked to share a little about our daughter Alison (Ally). There is so much to write about, but I think our focus should be about how such a small little girl has made such a big impact in this world.

It started before she was even born. The doctors told us that she would never be born alive. There was absolutely no hope. All through the pregnancy, Ally let me know she was there, kicking and moving every day. The doctors and nurses were amazed when she was born, and everyone in the operating room was overwhelmed with emotion.

Ally was transferred to Children’s Hospital of Philadelphia with many different issues. She survived two heart surgeries and was finally sent home with a feeding tube and a tracheostomy after eight months in the hospital.

After coming home, Ally continued to face health struggles. We survived multiple ambulance trips, three helicopter rides, and many, many close calls. Ally was finally re-admitted for a third heart surgery and was sent home in a more stable condition.

Throughout the many months Ally spent in the hospital, she touched the lives of countless people. Her fighting spirit and resiliency inspired all of us. But that was only the beginning of the impact she would make.

When Ally came home from the hospital at eight months old with a feeding tube and trach, we entered the world of home nursing. This world is both a blessing and a curse. Having people in your home 24 hours a day is really a big adjustment. Having a critical child is challenging enough, but getting a second job of managing schedules, nurses, equipment, and doctor appointments is not fun for anyone.

It takes a special caliber nurse to work in home care. You see, in a hospital you have respiratory therapists and other medical professions you can call for help with changing a trach, suctioning, and emergencies. In a home care setting, it is all up to the nurse and the parents. The good Aveanna nurses who have cared for Ally have made our life easier and made Ally’s life possible.

Ally has touched so many nurses along the way. There was one nurse who moved about one and a half hours away and continued to work with Ally until she graduated from preschool. This nurse wanted to see Ally walk. When she started preschool at three years old, Ally was not walking. Two years later, she walked down the aisle at graduation!

Another nurse makes it possible for us to go on vacation. She works our nights at the shore every year! She consistently fills in on call-outs and always makes it to her shifts. Even snowstorms don’t make her call out!

We are so grateful for the incredible nurses who have worked with our family. While they have changed our lives, we know Ally has changed their lives as well!

Ally has trisomy 21 (Down syndrome) and autism. We have always just thought of these diagnoses as labels, nothing more. We strive to get our daughter the help she needs to do whatever she wants or needs to do. Ally consistently overcomes barriers and, along the way, touches the heart of everyone she meets.

When Ally started kindergarten, she had a trach and a feeding tube. This made some of the kids scared, so I wrote a book with pictures that explained a little about her. My older daughter, Lizzy, and I went in and read it to the class. All the kids really listened, laughed, and asked great questions!

Ally is currently in fourth grade at our public elementary school in a Life Skills Class. She communicates with an iPad and sign language and will tell you everything she wants and needs in her own special way! She plays Challenger Baseball, High Five Soccer, and is in a special needs Girl Scout troop. She is very busy with other programs and therapies. She has touched so many lives through all of these activities!

Ally was the inspiration for a dance class created by my older daughter, Lizzy. It is called Everybody In [link FB page], and it is held twice a month for all people with special needs. Lizzy also enjoys serving as the President of the Best Buddies chapter at her middle school! She is one of the most beautiful people in the world and loves her sister with all her heart. I cannot tell you how many people have told us how impressed they are with her. I believe Ally has taught empathy to everyone in our family.

Ally with a big smileWe have met so many beautiful people that we would have never known thanks to Ally! I am on the board of the Chester County Down Syndrome Interest Group, have been involved with the Arc of Chester County, and am involved in many Facebook pages for moms of children with special needs. I am also the disability contact for our church and meet with contacts from other parishes all around the Philadelphia area. Each group allows me to understand the world of special needs a little better and help Ally in the process.

Ally still lives with a bad mitral valve, which will require a new valve in the near future. My husband, Jimmy, takes her to all her doctor and therapy appointments. We could not do it without him! His support is a blessing to Ally and our family.

For the past ten years, Ally has given us so many blessings and has taught us so much about life! We can’t wait to see what the next ten will bring!