Costello Syndrome… Meet Westin!!!

When I started Against the Grain as a new professional venture, it was important to me to also have this blog as an outlet to share with others. This is my place to share my recipes, experiences and knowledge with all of you freely and not for profit.

I am supportive of all charities, but it will be rare that I use this page for any type of fundraising. This is not to place any higher importance on one over another. I am just very cautious about advertising for them unless I am confident that the funds are truely going where they are inteded to.

But this is one of those special times to help some special little angels with Costello Syndrome. I have known Westin’s daddy for close to 30 years can say that Westin could not have come into a more loving and genuinely wonderful family. He is as much of a blessing to his parents Stephen and Angel as they are to him. Please take the time to read and share his story.

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Hi! My name is Westin, I was diagnosed with Costello Syndrome when I was 4.5 months old. I spent 30 days in the hospital my first year and have already had 4 surgeries on my throat, tummy, brain, and spinal cord. Costello Syndrome is a rare genetic disorder affecting only 500 people worldwide. It affects most of my systems. I have a feeding tube in my stomach to eat. I used to vomit up to 5 times a day. I have a 1 in 6 chance of developing cancer as a child so I have to do tumor screenings every 3 months. 85% of Costello kids have heart issues. So far I don’t have heart issues but I still have to get heart echocardiograms and EKGs every 6 months to check. I am growth hormone deficient so I am very short. I have extra fluid and crowding in my brain so I have to get brain MRI’s every year. I have scoliosis and kyphosis in my back. My toes were pointed so I just went through serial casting so that I can stand on flat feet. Now I have to wear ankle braces every day. I cannot stand on my own yet but I will keep working on it. My hands are quite fisted so I have to wear hand splints at night. I have developmental delays so I cannot walk or stand yet. I can sit, roll, and kind of crawl – but I usually leave my big ol’ head on the ground when I do it. I cannot talk yet – except for “ga” which I use for food or water. I can do some sign language. So far I can sign more, please, food, Mommy, Daddy, dinosaur, swing, diaper, all done, and brush my teeth. I have physical therapy, occupational therapy, and speech therapy each twice a week to help me learn all these fun things.In my free time, when I am not attending doctor appointments, attending therapy, or eating six times a day, I like to go for walks, go swinging, read books, and watch Backyardigans.

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I am collecting donations for our exciting 2013 Costello Syndrome Conference in Orlando, Florida from July 30 to August 4. We only have conferences every two years in the U.S. I was so lucky to attend the last conference in Chicago in July of 2011, right after I was diagnosed with Costello Syndrome. The conference was so amazing! I got to meet lots of doctors and researchers and participate in their studies on Costello Syndrome. I also got to meet fellow Costello kiddos from around the world which was so much fun!

The donations go direcly to funding the conference. It is very expensive to host a big conference and all the donations go towards the conference rooms, a small gift for the researchers, meals, babysitters, paper supplies, etc. The conference is planned completely by volunteers. This donation is tax deductible in the U.S. If I get enough donations, then my Mommy and Daddy can get their conference registration fees waived and some hotel costs waived.

Donating to the Costello Syndrome Family Network through this website is simple, fast, and totally secure. Just click on the big “Donate” button. You can also give Mommy and Daddy a check payable to “Costello Syndrome Family Network.”Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!And please follow my journey at http://www.WestinThomas.comThanks again!Westin Thomas (along with Mommy Angel and Daddy Stephen)
Westin’s Fundraising Page for Costello Syndrome Research and 2013 Conference

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