By: Ginny, Bella’s Mom 

Bella is an outdoor-loving, curious 10-year-old who stands 41 inches tall and weighs 29 pounds. She has an oversized personality in a tiny package. She is goofy and has recently found her need for independence. Using a “nubby” on her left arm and one finger on her right hand, Bella has learned many ways to manipulate things we never knew she could.  

Bella

Bella loves to travel and has seen all the southern states from coast to coast. We plan on starting the northern states this year. Bella’s all-time favorite thing is to be outside, preferably camping. She has her hammock chair and loves to go off-road in the mountains and have the wind blowing all around her. Her go-to toy is her piano. She loves to be loud and have people notice her. 

Bella was given her clinical diagnosis at just a few hours old and genetic diagnosis at two weeks. She was born with classic physical features, from eyebrows to arms. She weighed one lb., 12 oz, and was 12 inches long at birth. After 53 days in the NICU, Bella came home weighing three lb. 2 oz. 

CdLS does affect our family’s day-to-day life.

Bella gets up in the morning, cleans up, and needs medicine administered through her feeding tube. She needs help with just about everything. Bella is home-schooled but, does go to therapy weekly; we call her therapy sessions her school.  

Bella has challenges with her feeding and digestion. She has gastroparesis, a growth hormone deficiency, and a Specific Antibody Deficiency, each requiring specific medications. Her immune deficiency delayed her walking, and we have been working towards that goal ever since. Another challenge is Bella’s desire to “fit in” with her peers. She does not understand when they are able to do things she cannot or when other children do not want her to join in. Most 10-year-olds find it difficult to play with her using their games or toys.  

One of the most significant challenges we face is how people react to us in public.

Since she was a baby, we have gotten comments, some rude, from strangers who wanted to see her and ask about her. As she has gotten older, we ask people if there is something they want to know. We encourage kids to ask questions and talk with her. We hope this increases awareness and kindness.  

Having a child with CdLS has been an emotional roller coaster. At first, we wondered, “What did we do wrong to cause this?” Thankfully, we quickly moved on to “What can we do to make her life better?” It has made us better parents. We have become well-versed in every aspect of her care so that we can advocate for her.

There is never a dull moment, and we do our best to take it in stride and not let any of it define us. 

The CdLS Foundation has helped us, giving us a central group of people to email, call, and to look for help. They have connected us with the Children’s Hospital of Philadelphia (CHOP) and other families. We stay in touch with multiple people from the Foundation. 

CdLS may be Bella’s syndrome, but that does NOT define who she is!

Look deeper and get to know kids for who they are, not their label. We have chosen to live our lives out in the world. While we take precautions for Bella’s health, we rarely stay home and have made it our goal to give her the best life possible. Having a child with special needs does not mean you stop living; it means you find new ways, adventures, and experiences. It means you learn to cope with everything to give us all a life worth having! Do not back down because of comments and stares; smile because you know you have a uniquely amazing child, and most people will never know what that is like.