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Chase Mills: A Precious Boy, A Rare Disorder

COARSEGOLD — He’s a kick in the pants, says his mom, Karly Mills. Chase loves swimming and “all things little boys.”

“He’s so goofy and has such a sweet soul. He has no fear, which doesn’t help at all!”

Chase, 2 1/2, was recently diagnosed with Vascular Ehlers-Danlos Syndrome type 4 or VEDS type 4, for short.  The condition is an inherited connective tissue disorder defined by characteristic facial features in most patients, translucent skin with visible vessels on the trunk and lower back, easy bruising and severe arterial, digestive and uterine complications.

What that means, says Karly, is that Chase is at risk for a collapsed lung, and certain organs, like his large intestine, can burst at any time without warning.

“The best way someone put it to me is, if you and I are built like a house, we will be built with steel rods, wood and stucco,” Karly explains. “For Chase, it would be a house built with only Elmer’s Glue.”

The youngest of Karly and Jody Mills’ four sons, Chase has always been small, his mom says.  The couple has lived in the mountain area for 12 years, and their children also include Connor, 9, Cooper, 7, and Cade, 4. The kids go to Spring Valley School.

Mom has two businesses: one in custom home decor and design, and another planning weddings, a career in which Karly has excelled for twenty years. She’s also a beach-body coach. Dad Jody is a District Trainer for Spring Mobile local AT&T stores who also teaches night classes at night at San Joaquin Valley College.

Not long after Chase turned two, he was coming down a slide on his brother’s lap when his little foot got caught and he broke his leg. At Children’s Hospital, personnel determined Chase would need to be put under anesthesia in order to get a cast set on the broken leg, but it took three attempts to insert the IV. It turns out, this was due to VEDS, but no one knew that yet.

So began a months-long odyssey as doctors tried to figure out what was wrong with Chase. The orthopedic surgeon at the time said it’s really hard to break a bone in that situation, just coming down a play slide in a small park. They did tests, thinking that perhaps Chase had brittle bone disease. He does not.

Only 5 percent of people with VEDS are diagnosed at this age, notes Karly. The rest don’t find out until they are adults.

“He has always been really small,” Karly says, adding that Chase is in the lowest percentile for his age and size. “He doesn’t put on weight well and gets hurt very easily. We have been working with a genetics doctor in Fresno for a year now. Many many tests have been done and it was the last round of genetic testing that showed the positive outcome for VEDS.”

The older kids have always been gentle with Chase because he’s small. Their parents will educate the brothers further as the time comes and they get older.

In the meantime, close friends of the Mills have rallied around and created a fundraising page, Chasing the Moon, in order to help raise money so the parents can attend an upcoming medical conference on VEDS and face other mounting expenses.

On the Chasing the Moon page, Trisha Poffenberger and Sarah Lockwood wrote of Chase,

His amazing parents are working as hard as they can to learn what they need to know to help Chase live life to its fullest. Since VEDS type 4 is so rare, there are few doctors in the world who can even treat Chase. Four of these specialists will be together at a conference for VEDS and Karly and Jody need to be at this conference to meet with these specialist. We are a mountain community, a family. Let us be that village that raises a child. Please assist this local family in making it to this important conference …. so that they can learn all they can for their son, Chase.

Now that his parents and doctors know what the issues are, they are able to know his limits and try to avoid any activities and behaviors that could hurt him more.

Chase will wear a medical ID bracelet for the rest of his life. He will never be allowed to play competitive sports. With a likelihood of needing surgery at some point in his life, Karly and Jody are busy identifying the handful of surgeons in the United States who even know how to operate on people with VEDS.

The Mills have gone rather suddenly from parenting a sick child with an unknown condition to becoming advocates for Chase and all those children with this rare disease.

“It’s not easy at all,” Karly truthfully attests.

“It’s terrifying. All the not knowing. We are just doing everything in our power to give him the most normal life he can possibly have.

“Over the last year I have spent a lot of time at the doctors offices, hospitals, running tests and trying to figure out what’s going on. I’ll do everything in my power to get all the information possible for Chase, get him the best care, and raise awareness for VEDS.”

Visit Chasing the Moon on YouCaring to read more about Chase, his family, and VEDS.

Ehlers-Danlos Network

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