Diamondhead family copes with a very rare diagnosis - WLOX.com - The News for South Mississippi

Diamondhead family copes with a very rare diagnosis

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Ally Ally
Ally Ally
Amber McCue carrying Ally. Amber McCue carrying Ally.
Amber McCue Amber McCue
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DIAMONDHEAD, MS (WLOX) -

It's hard to learn that your newborn child has health issues; but imagine finding out that your baby has a disorder that fewer than 300 people have around the world. That's what happened to a Diamondhead family recently.

It took almost two years for Amber McCue to get a diagnosis for her little girl, Ally. The time waiting and going through tests was agonizing.

But now the family is finding out just how difficult it is to deal with a diagnosis of such a rare condition. Amber McCue found out just a few weeks ago that her two-year-old daughter has Costello Syndrome; a disorder that only affects 200 to 300 people worldwide.

"It's bittersweet. We're glad to have a diagnosis because now we'll be able to develop a plan of action and give her the best care, but Costello's is so rare, and it's a syndrome that we didn't want to have."

Costello Syndrome affects many parts of the body. Amber says it causes, "brain abnormalities, developmental delays, heart problems, and bone problems and the scariest part is she has a one in five chance of developing one of three childhood cancers."

Needless to say, her health conditions require a lot of medical attention. Ally already has at least six doctors; specialists ranging from a cardiologist to a neurologist. She says it's not easy, but they make the best of it.

"It can be devastating at times, but I try to stay focused on what we need to do for Ally today to give her the best chance."

And they are seeing improvements. She's learning to eat small meals; something she couldn't do for a long time. However, she still has a feeding tube to make sure she gets the nutrition she needs. Her communication skills are also improving.

"She doesn't really speak, but she's learning sign language and hopefully she will speak soon."

Amber recently moved back in with her Mom, Tammy Phillips, for extra help and support.

"Ally loves her grandmother and it's very helpful."

But it's definitely an uphill battle and they still have so much to learn about Costello Syndrome. Still, they consider every day with Ally a gift, and Amber says that makes their daily challenges so much easier.

"You're as strong as you have to be. She keeps me upbeat because she's a darling angel, so I'm able to do that for her."

Amber hopes to take Ally to Orlando, Florida in July for an annual conference, where she could see doctors who specialize in Costello Syndrome. She's trying to raise money for that trip. If you'd like to help, there's an Ally McCue Benefit Fund set up at Hancock Bank.

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