Written by Jennifer and Gary, Cambrian’s Parents

Cambrian is smart, sweet, and full of personality! He loves undivided attention, being held, and snuggled close. With three lively siblings — Cameron, Camylle, and Campbell — there’s never a dull moment in the house. He keeps everyone smiling with his silly antics, especially his impressive “fake sleeping” and “fake crying.”

Though almost three and nonverbal, Cambrian communicates beautifully in his own way. Through cues and gestures he’s developed, he lets us know exactly what he wants or needs. Like any other sibling, he can get jealous if one of the others is getting extra attention!

Cambrian is G-tube fed but continues to work on oral feeding skills with his speech therapist. He’s very spoiled — and rightfully so — just like his siblings. One of his favorite places to be is at a baseball field, cheering on his big brothers. Car rides have improved lately, but if he’s tired, he can still get upset enough to make himself sick, which can be nerve-wracking. Even though he hasn’t aspirated recently, the fear is always there.

To know Cambrian is to know that God makes every child perfectly in their own way. Physically and developmentally, he may look different from other children, but “different” isn’t bad — it’s simply God’s unique work. Cambrian is a happy little boy and a true blessing to our family and community.

A Journey of Faith and Strength

Finding out we were having complications at our 20-week anatomy scan was heartbreaking and terrifying. What began as a routine appointment quickly turned serious when the technician spent extra time looking at his heart and brain. After a long wait, the doctor confirmed that our baby wasn’t developing as expected — mentioning missing limbs, a heart condition, and a brain cyst. We left in tears, overwhelmed with fear of the unknown.

Initially, doctors suspected he wouldn’t be a viable pregnancy. We were referred to specialists in Orlando at Winnie Palmer Hospital and began a long period of testing and waiting. Through multiple rounds of bloodwork, we eventually received the diagnosis: Cornelia de Lange Syndrome (CdLS).

The prognosis was uncertain and the outlook seemed bleak, but what mattered most was that our baby was viable. Researching CdLS was scary, but eventually a calm came over us — we knew God was in control. Life has never been the same since, but we wouldn’t change a single moment. Cambrian has taught us patience, faith, and strength. He guided us through 75 days in the NICU, multiple surgeries, and countless milestones.

“Our best advice for families facing uncertainty is simple: trust that God won’t give you more than you can handle — and accept help from others. It truly takes a village.”

A Day in Cambrian’s Life

Cambrian’s days follow a comforting routine. His feeding pump runs through the night and stops at 7 a.m., just before he wakes up around 7:30. He often scoots to the bottom of his crib and kicks the side, as if knocking to be let out. Most mornings start with big smiles and hugs.

Four days a week, his wonderful nurse, Mrs. Kelly, helps care for him — a blessing not only to Cambrian but to our entire family. His feeding schedule runs every two hours on and off throughout the day, using a pediatric peptide formula since he has a dairy allergy. We’re big believers in probiotics, which help manage his chronic constipation.

Twice a week, he receives in-home therapy — one day for speech and feeding, and another for physical therapy. Some weeks we travel to Orlando for specialist appointments; other weeks we’re home, incorporating therapy into playtime.

Evenings are busy with his siblings’ activities, but Cambrian loves to tag along. Bedtime is consistent: medication, pajamas, and winding down with Daddy by 8:30. Despite his dislike of having his hair washed, we’re making progress! He’s asleep by 9 p.m., sleeping soundly for 10+ hours.

Our Village of Support

We are blessed with an incredible support system — family, friends, our nurse, and an amazing team of doctors at Arnold Palmer Hospital. Cambrian has a special bond with many relatives, including his creative Great Aunt Amy, who even designed custom sleeves to help him color and feed himself.

When Cambrian has been hospitalized or recovering from surgery, our family steps in to care for his siblings, allowing us to stay by his side. He’s thriving because of the love surrounding him.

Having a child with special needs has revealed a strength in us we never knew we had. We’ve learned to advocate fiercely — to question, to push, and to trust our instincts. Even with the best doctors, a parent’s intuition is powerful.

Living Life Fully

Cambrian loves adventures! He enjoys being outdoors — as long as it’s not too hot (a challenge in Florida). This summer, he got his passport and became quite the traveler, visiting Nashville, Virginia, Niagara Falls, and Vermont. A cruise is next once he’s healed from his upcoming surgery.

We make every effort to include Cambrian in all family experiences — concerts, festivals, sporting events, museums, the beach, and beyond. Yes, it’s harder, but so worth it. When people stare, we try to respond with openness, especially toward curious kids. It’s a joy to educate others about CdLS and celebrate Cambrian’s uniqueness. His siblings proudly share his story too — they’re his biggest cheerleaders.

A Family Transformed

“Life in our home looks different now — slower, more intentional. Feeding pumps, oxygen machines, and medical supplies are part of our daily scenery. Therapies come to us, nurses visit often, and we know the hospital staff by name. But through it all, we’ve learned to focus on love, laughter, and gratitude.”

Recently, Cambrian has become more mobile, scooting around the house or cruising in his walker. His upper limb difference doesn’t slow him down — he loves buttons, balls, and exploring. He’s drawn to sloths, which feels fitting; they move at their own pace, just like him.

As his third birthday approaches, we can’t help but smile through tears of joy. Cambrian has come so far — further than we ever imagined. He is strong, determined, and full of light. Our hearts are overflowing with pride and love for our perfectly made little boy.