Chloe

 

At age five, Chloe weighs just 19 pounds. She was diagnosed with primordial dwarfism, where individuals are strikingly small for their age since birth. It's an extremely rare condition with fewer than 100 people worldwide officially diagnosed with the condition. But this little firecracker has never defined herself by her size, but rather by her skills. This social butterfly loves gymnastics, jumping on the trampoline, and rock climbing. She may be small in size, but certainly not in presence.

 

Below her mom Elizabeth tells us more about Chloe and their struggle to get a diagnosis:

 

When was Chloe finally diagnosed?

We didn't get a diagnosis until 2006. For four and a half years her condition was unknown.

 

When did doctors know something was wrong?

At my 30-week check up [while pregnant], they pulled us into a room and told us something was wrong … that the baby wasn't growing. We went to see different specialists, and they couldn't figure out why she wasn't growing. I was healthy and was monitored very closely. They couldn't give us an explanation. They just told us to prepare for the worst.

 

What happened when she was born?

[Chloe was not born at Phoenix Children's]

We were prepared to have the baby come out with serious problems, but she was great. She weighed only three pounds and three ounces even though I had her at 36 weeks. But she was doing terrific, she was just unbelievably small. It was almost too much for the doctors to believe.

 

What did doctors try to do?

They were trying to stimulate her growth with extra calories, but her body rejected it. She was tube fed for the first 10 months. They were looking at all kinds of metabolic stuff. We struggled for four and a half years with a child that didn't grow or gain weight, but mentally was doing well and hitting all of her milestones. At one point, they just ran out of tests to run on her. They were calling it Chloe's Syndrome.

 

What was it like for you and your husband?

We were desperate. You want to help your kid and don't want to see them hurt. It was heart wrenching. We would have flown her anywhere or have done anything to make her better. You're just in survival mode.

 

How did you feel when you finally knew that Chloe had Primordial Dwarfism?

It's so incredibly rare … the rarest of rare. When we got the diagnosis we had mixed emotions and we had to mourn it … the hope of how your child's life will work out. But a wave of acceptance set in and we focused on how we could support her. When you go through something like this it makes your heart a little softer and you know what's truly important.

 

Photos are courtesy of Jill Reger Photography.