Q: Can you tell us the story of Gatlin?
A: Gatlin was born at 34 weeks gestation. We were unaware that Gatlin had any diagnosis at that time but we did know that he didn’t seem to be growing correctly. At my last ultrasound he didn’t move for thirty minutes and the doctors decided he would be safer if we delivered him early. We had an early and unplanned c-section which included a very traumatic birth for he and I both. Gatlin was born weighing only 3 lbs and 07 ounces and spent the first 51 days of his life in the NICU. There were many identifiable delays and concerns which prompted genetic testing. Gatlin was diagnosed with a rare, genetic disorder called Prader-Willi Syndrome whivh occurs in approximately 1:15,000 individuals.
Currently, Gatlin suffers from failure to thrive, low tone, globally delayed milestones and difficulty with feeding. He uses a g-tube for liquids and requires oxygen during sleep due to his low tone. As he grows older, the typical symptoms of PWS include an insatiable hunger and inability to control food intake. This means that individuals who suffer from Prader-Willi Syndrome feel like they are starving every second of every single day no matter how much they have ingested. The diagnosis of Prader-Willi Syndrome also includes a variety of other challenges and is considered a disability that requires multiple discipline and therapeutic interventions.
Q: What are Gatlin’s biggest and best strengths?
A: He has the sweetest nature. He is very social and playful and is genuinely a well behaved little boy. He rarely cries and honestly smiles almost constantly. He works hard during therapies every single day to build his strength and tolerance to perform basic tasks. Each small accomplishment is a victory in our book! Although his timetable is not the same as neuro-typical kids, once he figures out how to complete a task or milestone, he works until it is mastered!
Q: What activities does Gatlin enjoy?
A: Gatlin enjoys socializing more than anyone else I know. He is happy to have individualized attention but is easily distracted by whatever else is going on around him. He hates to not be the center of attention and typically will make sure that everyone around him engages with him in some way. He will smile at or “talk” to anyone around him. He absolutely loves to be read to and enjoys learning how to play with new toys.
Q: What have you learned from Gatlin?
A: Gatlin has taught me a lot about myself. He has taught me that I am stronger than I ever imagined. He reminds me that God is in control and despite our circumstances we are truly blessed. His sweet nature prompts me regularly to be a kinder human. His differences make him more special not only to me but to those around us. It can be difficult at times to raise a special needs child in a world full of “normal” but what is this perceived normal anyway? Gatlin teaches me every single day to change my perspective, to try and understand things in another light, and to open my heart and mind to the beauty of differences.
Q: What is your mission as you advocate for your child?
A: Prior to having Gatlin I worked as a Certified Occupational Therapy Assistant with both pediatric and geriatric populations. Inclusion and ability (versus disability) were already near and dear to my heart. The first year of his life was a whirlwind of traumatic events, a scary diagnosis, new motherhood and major life changes. Now that we have crossed those bridges, I feel on fire to tell the world about both Gatlin and Prader-Willi Syndrome. Most people have never heard of this rare, genetic syndrome and I want to educate them. I want people to not only be aware of PWS but what it is, what that means, and how they can be more cognizant and helpful to individuals affected. I want Gatlin to be surrounded with supports for the challenges he faces but I also want him to be included for who he is and not what diagnosis he may have. I want him to live a full and healthy life and believe that not only is that possible but we all have a hand in making that plausible. In addition, I want to show the world what Gatlin CAN do versus what the textbooks say he cannot.
Q: Would you mind sharing some resources that have been most helpful to you?
A: PWSAUSA.org has been one of the biggest resources so far. Once diagnosed they sent me a plethora of updated resources and information that shed light and hope for Gatlin’s future. They connected me with other families who have the same diagnosis and they provide a variety of different resources in the many different areas of need.
I am a part of multiple PWS Facebook groups where I am able to connect with other parents and share accomplishments, struggles and general knowledge with.
UF Shands is home to Dr. Jennifer Miller who is a world renowned Endocrinologist who specializes in Prader-Willi Syndrome. She is an amazing doctor who spreads hope for the future and has made herself accessible and well known within the PWS community.
And lastly, surrounding myself and Gatlin with friends and family who support us, pray for us, guide us, help us, and love us is the most important resource we have.
Q: What do you want the world to know about Gatlin?
A: I want the world to know that Gatlin will move mountains. He will beat the odds and trials set before him. He will not be a statistic. Gatlin is more than capable of doing anything he sets his mind too. He will have to overcome obstacles but they will only be a part of his journey. He will not be put in a box because of his diagnosis. Prader-Willi Syndrome is a part of Gatlin but only a small part. He will rise above what others say his ability is and with hard work and perseverance as well as a huge support system he will reach every goal he strives for!
Follow Galin’s journey on facebook here: https://www.facebook.com/GrowingwithGatlinPWS/
Thank you for reading Gatlin’s Able Story, and thank you for loving and supporting us here at The Able Fables.