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Alonzo’s Story: From Broken Dreams to a Hopeful Future

Patients

Alonzo

Before her son was born, Lourdes had many hopes and dreams of what his life would be like. Then those dreams were suddenly shattered by an unexpected diagnosis.

The first warning signs came at a routine ultrasound before Lourdes’ son, Alonzo, was born. Doctors discovered that the baby was measuring very small – in the 1st percentile – and was missing a finger. But Lourdes was determined to do everything she could to bring her son safely into the world.  Alonzo was born full-term in January 2017, weighing just under 4 pounds. He had trouble breathing and was admitted to the Neonatal Intensive Care Unit. 

“The next morning, one of the neonatologists came to my room and told me she suspected that Alonzo had Cornelia de Lange syndrome,” said Lourdes. “I had never heard of that before.”

Cornelia de Lange syndrome is characterized by growth deficiency, feeding difficulties and other physical and cognitive delays. It can also cause hearing and visual impairment, heart defects, missing limbs and fingers, and urinary system abnormalities. Genetic testing confirmed Alonzo’s diagnosis.

“I was in shock,” said Lourdes. “When you’re pregnant, you have all these dreams of who your baby is going to be. And when you get this diagnosis – or any type of diagnosis – those dreams are shattered.”

Fortunately, Lourdes already had a lot of experience working with special needs children. Before Alonzo was born, she started working as a Medical Assistant and teacher at KidStreet, a unique rehabilitative care facility run by Children’s Hospital Colorado. At KidStreet, babies and toddlers with complex medical needs can get the personalized care, support and therapies they need to help them thrive – care that would never be possible in a traditional preschool or daycare setting. Lourdes knew that there was no place better equipped to care for her son than KidStreet.

“KidStreet does everything they can to give Alonzo every opportunity,” said Lourdes. “Every staff member there has made such an impact on his life, and I will always be grateful for them. They shout my son’s worth. KidStreet and Children’s Hospital Colorado see the ‘able’ in the ‘disable.’”

Alonzo started coming to KidStreet at just 3 months old, where he began a wide range of therapies – everything from music and feeding to physical and occupational therapy. One of Alonzo’s biggest challenges in the beginning was learning to take a bottle. He didn’t have the strength to suck, so getting him to take a single ounce of milk would take an hour. Eventually, doctors decided to give him a feeding tube, and that’s when Alonzo began to take off.

He started gaining weight, rolling over and using his four-fingered hand to grab things. He learned how to eat on his own, and a few months before turning 3, Alonzo started walking independently – and then running!

“One of the most special moments that I had with Alonzo was when he took his first steps on his own without anyone’s help,” said Alonzo’s father, Raul. “He has beaten all the odds and proven to be very resilient.”

Now 3 years old, Alonzo is now an active, happy child who adores his big brother, Ollie, and his stuffed elephant, Ellie. He continues to make progress with the help of a wide variety of pediatric specialists at Children’s Colorado. Alonzo is treated by the Audiology team for hearing loss and wears hearing aids.  He’s also seen by the Breathing Institute and Aerodigestive Clinic for central sleep apnea, and he uses a CPAP machine to sleep at night.

Over the past year, Alonzo has made so much progress that he graduated from KidStreet last spring and will start preschool with similar-aged children in the fall.

I’m so proud of him,” said Lourdes “Yes, he’s a child with special needs, and I have to advocate for him. But what been surprising is to see how much he advocates for himself with his amazing, loving personality. He just brings happiness wherever he goes.”

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