KOLD News 13Tiniest, sickest Arizonans to feel budget axe

Tiniest, sickest Arizonans to feel budget axe

By Barbara Grijalva - bio | email

Because of Arizona's budget slashing, the most vulnerable among us are seeing a program that changes their very lives disappear.

Imagine not being able to pick up a pencil and write properly because you never learned to grasp a toy the way other children do.

It's what can happen to some children who have developmental disabilities and don't get early intervention therapy...therapy that stops a cascade of problems and changes the life of a child and her family.

Now state budget cuts could be condemning some of the youngest Arizonans to a lifetime of problems that could have been prevented.

Two-year-old Arianna West and Sofia Tonelli-Pepe, almost two, seem like healthy little girls, playing and learning to share.

But each was born with more than her share of health problems.  

Arianna was four weeks premature, with five heart defects.

"Then at five weeks old we found out she had deletion of her 22nd chromosome so she was diagnosed with this deletion and we were told there are 180 anomalies that are associated with this," her mom, Vanessa West, says.

So the West family waits, watching for the next health issue to pop up.

Sofia was born with Down syndrome.

Then, at five months old, she had two open heart surgeries.

"She went into heart failure two weeks of age that played a major role in her lack of development, says Sofia's mom, Christina Tonelli.

Sofia's heart was working so hard, she too exhausted even to eat.

"Because she lost the ability to eat when she went into heart failure, the muscles in her mouth didn't develop, allowing her to progress to speech," Tonelli says.

The lives of both children and their families were changed by Arizona's Early Intervention program.

It sends therapists into homes to work with children from birth to age three.  

But now Arizona is eliminating the program entirely, leaving families on their own, and desperate.

"It was horrible. It was really horrible. I mean I started crying.  Today was our last speech therapy session, so that is kind of hard," West says.

Maureen Dykinga and Lynn Guyot are therapists who help children like Arianna and Sofia, basically, catch up.

It's preventive therapy, from birth to three, the most critical time for learning.

"How to roll over, sit up, be able to stand and walk, be able to put things in their mouth in order to eat, and later to be able to speak" Lynn Guyot says.

She adds, "If we can get services between birth to three, some children are just caught up and they're fine and they never need services beyond the age of three."

After age three, it's more difficult and more expensive to rearrange wrong connections in the brain.

"I know if it wasn't for our speech therapists and our occupational therapists, she would be having a feeding tube and she would probably not be talking as much and I would just be really at a loss," West says about her daughter.

Both moms feel fortunate their children at least got some therapy to give them a good start in life, but they worry about other children.

"They need to learn how to walk. They need to learn how to eat. They need help developing. Zero to three is not where to cut it," Tonelli says.

 Most insurance will not pay for therapy for these children.

Vanessa West has started a Tucson chapter of Mended Little Hearts, a support group for families and caregivers of children with heart defects and heart disease.

Christina and Dennis Tonelli also have a web site for parents and caregivers of children with Down syndrome called Downright Beautiful.