One Of A Kind: 49th States Only Child With Rare Disease

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by Whitney LB Miller

ANCHORAGE - Nearly two years ago Veronica Cuevas gave birth to a beautiful baby boy; shortly after nurses noticed that something wasn't quite right.

"When he was born his doctor noticed different things so he stayed on top of it and did all types of testing and finally genetics came up with that," said Veronica Cuevas

     In April baby Shelton was diagnosed with Cockayne syndrome, a rare genetic disease that doctors say can cause developmental delays.
     One estimate shows the syndrome effects 1 in every 500,000 children born.

"He's had many testing blood work you name for a six pound 2 month old that's a lot,"she said.

     Fed with the help of a feeding tube baby Shelton, like many children with the disease, has a short stature, small head and is sensitive to light.

Veronica says "He has CS type 2; which means that he has a short life span any where from 4 to 7 years old."

     In a search for answers Veronica ran across the Share and Care Cockayne syndrome network - a volunteer organization dedicated to connecting families and raising funds for research.

Jacki Clark, the Executive Director, says "As soon as we learned about him and saw baby Shelton we knew he had Cockayne syndrome and we wanted to meet him in person.

     In August Share and Care flew him and his family to Washington D.C. for their annual conference.

"There are so many kids who are not diagnose, there are families who have lost children who never received a diagnosis and I would like to try and bring awareness," Clark said."
     Since Shelton's diagnosis-- the family has spent well over $20,000 to find answers..
     Share and Care built a donation website  for baby Shelton to help find those answers.
     Just 12 pounds; Veronica says he is getting stronger everyday, she believes it has everything to do with all the love and support she's received.

"We got this precious baby this miracle baby I think he was given to me for a reason...to keep me strong to keep all of us strong were all very close," she said.

     Staying close...strong and positive Veronica says is the only way to deal with the uncertainties.
 

You can learn more about Baby Shelton and his rare syndrome by logging on to his fundraising page. www.firstgiving.com/fundraiser/veronicacue/HelpingSheltonGrow

 

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