Weston's Williams Syndrome story
Donation protected
My name is Kelsey Braaten and I work with Sam and Dustin Devary. I wanted to help the Devary's in a way they were, perhaps, not comfortable in doing themselves and asked them if I could set up this page in hopes to help them out financially. Please open your heart with support for this family.
Samantha (Potter) Devary, born in Park Rapids, MN grew up in Akeley, MN and Dustin Devary was born in Nebraska, and raised in Dilworth, MN. Sam and Dustin met in 2005 and were married on July 23rd, 2011. In 2014, the couple learned they were pregnant. Both are currently employed at Integrity Windows and Doors in West Fargo.
This is their story:
“Even before our bundle of joy arrived, we and his doctors had concerns. Weston wasn’t growing at the expected pace and at 26 weeks gestational age, he was falling behind in size. The doctors’ prognosis, IUGR – Intrauterine Growth Restriction, and by this point he was already a month behind others at that age. This is when the “what if’s” began. What if he has dwarfism? What if he has this or that? What if he doesn’t survive? We went through many tests, from blood draws to ultrasounds and giant needles; every test came back negative.
Given all of the negative test results, my pregnancy was classified as high risk which led to much stress and worry, as well as two weekly ultrasounds and OBGYN visits for me once every two weeks. At 34 weeks our appointments increased to 3 ultrasounds, many Doppler ultrasounds, a stress test, and a weekly OBGYN visit. At this time the doctors wanted to do an induction at 37 weeks. This terrified us as all we could think was that he was not ready yet! At our 37 week ultrasound the doctors changed their minds; Weston weighed in at just over 4 lbs and was only about 14 inches long. We needed him to weigh at least 5 lbs before he was born.
To have these kinds of discussions makes one think you are doing everything wrong! After many conversations with friends and loved ones, I was able to accept that this wasn’t my fault and it was just something I had to work with. I increased my caloric and fluid intake hoping this would help and it did; at 38 weeks we hit our mark and were scheduled for induction. We welcomed Weston Rory James Devary to the world at 4:26pm on May 30th 2015, weighing 5 lbs 12 oz and 18 inches long.
After failed hearing tests, GI issues and many more tests Weston was still behind on many things. This led us to our first Genetics appointment with Dr. Kari Casas, where we discussed many syndromes that Weston may have due to some of his traits. Dr. Casas made the suggestion that we have a chromosomal test done to find out if he had any deleted genomes. With the daunting $3000 price tag for this test we, as a family, initially decided against it. In our minds Weston was perfect and we were unable to see what everyone was fussing about. He was little but everything was fine and we didn’t want to believe that anything was wrong with our little boy but after multiple requests from his doctors on top of many scary possible prognoses, we took the financial hit.
Ultimately, I am glad we did and after 3 long weeks, we received a call that our geneticist wanted to see us that day. This moved our scheduled appointment up by two weeks and on April 21st, we finally had our answer when Weston was diagnosed with Williams Syndrome. He had the regular 26 genes missing on his 7th chromosome as well as 2 additional deletions, 2 more on the 7th and 2 on the 2nd. Our outlook with Weston is lifelong doctors’ visits, many blood draws, new tests, developmental delays, possible mental handicaps, anesthesia risk for any future surgeries and the list truly goes on. With the missing ELN gene or elastin, Weston wouldn’t have all the needed fibrous tissue needed for his connective tissues, which leads to a higher chance of organ, joint and muscle issues. (Elastin is the major component of elastic fibers, which are slender bundles of proteins that provide strength and flexibility to connective tissue. These elastic fibers give structural support to organs and tissues such as the heart, skin, lungs, ligaments and blood vessels.)
This being said our biggest concerns were his heart and vessels that surround it as well as all other major organs. Now the ultrasounds began for him instead of mom. We made it through our first ultrasound like a breeze and got positive results with no abnormalities of his lungs, liver or kidneys. Then it came time for the heart ultrasound. With high hopes that this would go as well as the first, we were in for a rude awakening. In order to perform the ultrasound, Weston needed to be held down on a table for two hours, while he cried, and is to this day one of the hardest things I have endured.
Thankfully, Weston’s heart and vessels were holding strong. We were told that with the symptoms described early on, were the same as a narrowing of the vessels around the heart. This had fixed itself and normally does if the child makes it to their first birthday. Although the threat of heart surgery is low now, it will still be a possibility in his future. As Weston grows, so will his organs and every 1 – 2 years we will have to go through the grueling heart ultrasound again.
With a small win behind us the next concern became apparent; after multiple blood draws we received news that Weston’s calcium levels were high (aka hypercalcemia). To us, it just meant more blood draws, another doctor to remember and more concerns for the future. His calcium levels will need to be rechecked every 2 months and he is unable to consume any additional calcium so no vitamins and no milk/dairy.
With this new schedule as part of our life, we moved on to the vascular lesion on Weston’s right eye. (Vascular lesions are the result of numerous or large vessels that form directly underneath the skin and are present at birth or arise shortly after.) We met with an eye doctor here, Dr. Anderson at Sanford Broadway Clinic, twice before we were referred to a specialist, which means yet another doctor but this one is located in South Dakota. After a 4 hour long car drive and 3 hour appointment, Dr. Tufty at Sanford Children’s Hospital decided to postpone surgery. Our next appointment is scheduled for the day before Thanksgiving 2016, which of course isn’t ideal for the holidays but considering Weston’s anesthesia risks, the doctors feel that he needs to weigh more as 15 lbs for a 14 month old is not ideal. The pressure to his eye caused by the lesion is not yet to the point that they would risk the concerns with anesthesia, so more visits and more time away from work are in our future.
Once back from South Dakota, I began looking for additional help for Weston’s developmental delays. I was led to seek help with early intervention from Pediatric Therapy Partners by a Williams Syndrome family I met on my support website. We have started services with Weston at Pediatric Therapy Partners.
To end on a happy note, I want to share some of our positives: Weston can say ‘Mom’ and ‘Daddy’, he can crawl, stand next to furniture, and he gives us big smiles when we tickle him or sing to him. Weston loves water, whether it is bath time, in the pool, puddles, lakes and especially the sink. He tries feeding himself, he has started to babble and he passed his Cardio Scan.
Dustin and I are so grateful to have many loving and supportive people in our life; I don’t know how we would be able to handle the endless questions, paperwork or fears without all of your help. Thank you.”
THANK YOU for taking the time to learn more about Weston’s William Syndrome story! Please consider assisting Sam and Dustin with Weston’s mounting medical expenses, as well as expenses they will continue to accrue over his lifetime. Sam and Dustin should be allowed the privilege of only having to love and take care of Weston and to make sure he has everything he needs. The added financial stress they are enduring is something that you can directly help with. Any donation, large or small will greatly help this wonderful family in their time of need. If you are unable to give at this time, please consider saying a prayer and if nothing else, please educate yourself on Williams Syndrome.
To learn more about Williams Syndrome, please visit: https://williams-syndrome.org/
To learn more about Pediatric Therapy Partners, please visit: http://pediatrictherapypartners.com/
Samantha (Potter) Devary, born in Park Rapids, MN grew up in Akeley, MN and Dustin Devary was born in Nebraska, and raised in Dilworth, MN. Sam and Dustin met in 2005 and were married on July 23rd, 2011. In 2014, the couple learned they were pregnant. Both are currently employed at Integrity Windows and Doors in West Fargo.
This is their story:
“Even before our bundle of joy arrived, we and his doctors had concerns. Weston wasn’t growing at the expected pace and at 26 weeks gestational age, he was falling behind in size. The doctors’ prognosis, IUGR – Intrauterine Growth Restriction, and by this point he was already a month behind others at that age. This is when the “what if’s” began. What if he has dwarfism? What if he has this or that? What if he doesn’t survive? We went through many tests, from blood draws to ultrasounds and giant needles; every test came back negative.
Given all of the negative test results, my pregnancy was classified as high risk which led to much stress and worry, as well as two weekly ultrasounds and OBGYN visits for me once every two weeks. At 34 weeks our appointments increased to 3 ultrasounds, many Doppler ultrasounds, a stress test, and a weekly OBGYN visit. At this time the doctors wanted to do an induction at 37 weeks. This terrified us as all we could think was that he was not ready yet! At our 37 week ultrasound the doctors changed their minds; Weston weighed in at just over 4 lbs and was only about 14 inches long. We needed him to weigh at least 5 lbs before he was born.
To have these kinds of discussions makes one think you are doing everything wrong! After many conversations with friends and loved ones, I was able to accept that this wasn’t my fault and it was just something I had to work with. I increased my caloric and fluid intake hoping this would help and it did; at 38 weeks we hit our mark and were scheduled for induction. We welcomed Weston Rory James Devary to the world at 4:26pm on May 30th 2015, weighing 5 lbs 12 oz and 18 inches long.
After failed hearing tests, GI issues and many more tests Weston was still behind on many things. This led us to our first Genetics appointment with Dr. Kari Casas, where we discussed many syndromes that Weston may have due to some of his traits. Dr. Casas made the suggestion that we have a chromosomal test done to find out if he had any deleted genomes. With the daunting $3000 price tag for this test we, as a family, initially decided against it. In our minds Weston was perfect and we were unable to see what everyone was fussing about. He was little but everything was fine and we didn’t want to believe that anything was wrong with our little boy but after multiple requests from his doctors on top of many scary possible prognoses, we took the financial hit.
Ultimately, I am glad we did and after 3 long weeks, we received a call that our geneticist wanted to see us that day. This moved our scheduled appointment up by two weeks and on April 21st, we finally had our answer when Weston was diagnosed with Williams Syndrome. He had the regular 26 genes missing on his 7th chromosome as well as 2 additional deletions, 2 more on the 7th and 2 on the 2nd. Our outlook with Weston is lifelong doctors’ visits, many blood draws, new tests, developmental delays, possible mental handicaps, anesthesia risk for any future surgeries and the list truly goes on. With the missing ELN gene or elastin, Weston wouldn’t have all the needed fibrous tissue needed for his connective tissues, which leads to a higher chance of organ, joint and muscle issues. (Elastin is the major component of elastic fibers, which are slender bundles of proteins that provide strength and flexibility to connective tissue. These elastic fibers give structural support to organs and tissues such as the heart, skin, lungs, ligaments and blood vessels.)
This being said our biggest concerns were his heart and vessels that surround it as well as all other major organs. Now the ultrasounds began for him instead of mom. We made it through our first ultrasound like a breeze and got positive results with no abnormalities of his lungs, liver or kidneys. Then it came time for the heart ultrasound. With high hopes that this would go as well as the first, we were in for a rude awakening. In order to perform the ultrasound, Weston needed to be held down on a table for two hours, while he cried, and is to this day one of the hardest things I have endured.
Thankfully, Weston’s heart and vessels were holding strong. We were told that with the symptoms described early on, were the same as a narrowing of the vessels around the heart. This had fixed itself and normally does if the child makes it to their first birthday. Although the threat of heart surgery is low now, it will still be a possibility in his future. As Weston grows, so will his organs and every 1 – 2 years we will have to go through the grueling heart ultrasound again.
With a small win behind us the next concern became apparent; after multiple blood draws we received news that Weston’s calcium levels were high (aka hypercalcemia). To us, it just meant more blood draws, another doctor to remember and more concerns for the future. His calcium levels will need to be rechecked every 2 months and he is unable to consume any additional calcium so no vitamins and no milk/dairy.
With this new schedule as part of our life, we moved on to the vascular lesion on Weston’s right eye. (Vascular lesions are the result of numerous or large vessels that form directly underneath the skin and are present at birth or arise shortly after.) We met with an eye doctor here, Dr. Anderson at Sanford Broadway Clinic, twice before we were referred to a specialist, which means yet another doctor but this one is located in South Dakota. After a 4 hour long car drive and 3 hour appointment, Dr. Tufty at Sanford Children’s Hospital decided to postpone surgery. Our next appointment is scheduled for the day before Thanksgiving 2016, which of course isn’t ideal for the holidays but considering Weston’s anesthesia risks, the doctors feel that he needs to weigh more as 15 lbs for a 14 month old is not ideal. The pressure to his eye caused by the lesion is not yet to the point that they would risk the concerns with anesthesia, so more visits and more time away from work are in our future.
Once back from South Dakota, I began looking for additional help for Weston’s developmental delays. I was led to seek help with early intervention from Pediatric Therapy Partners by a Williams Syndrome family I met on my support website. We have started services with Weston at Pediatric Therapy Partners.
To end on a happy note, I want to share some of our positives: Weston can say ‘Mom’ and ‘Daddy’, he can crawl, stand next to furniture, and he gives us big smiles when we tickle him or sing to him. Weston loves water, whether it is bath time, in the pool, puddles, lakes and especially the sink. He tries feeding himself, he has started to babble and he passed his Cardio Scan.
Dustin and I are so grateful to have many loving and supportive people in our life; I don’t know how we would be able to handle the endless questions, paperwork or fears without all of your help. Thank you.”
THANK YOU for taking the time to learn more about Weston’s William Syndrome story! Please consider assisting Sam and Dustin with Weston’s mounting medical expenses, as well as expenses they will continue to accrue over his lifetime. Sam and Dustin should be allowed the privilege of only having to love and take care of Weston and to make sure he has everything he needs. The added financial stress they are enduring is something that you can directly help with. Any donation, large or small will greatly help this wonderful family in their time of need. If you are unable to give at this time, please consider saying a prayer and if nothing else, please educate yourself on Williams Syndrome.
To learn more about Williams Syndrome, please visit: https://williams-syndrome.org/
To learn more about Pediatric Therapy Partners, please visit: http://pediatrictherapypartners.com/
Organizer and beneficiary
Kelsey Rae Braaten
Organizer
Fargo, ND
Samantha Devary
Beneficiary
