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8 Year Old Cooper
Cooper and his mom Christine, did such a great job bringing awareness to Williams syndrome. Cooper is a sweet, active boy. He loves going to school and has a great group of friends. His mom is so very proud of him. She works very hard at getting Cooper the help that he deserves. Cooper is a super cool kid. Check out his story at the link below.
Cooper's Story
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Gratefully Enabled
At Eloise's one month check-up her pediatrician detected a heart murmur. It turned out to be a minor VSD with a minor Supravalvular Pulmonary Stenosis. No major problems. Then she began to not meet her milestones. Then there was a "slight farsightedness" when tested at daycare. Then the constant Refux. I KNEW it all had to add up to something. Thankfully, we were already involved in Early Intervention with PT and OT. But still no diagnosis. After her cardiologist ordered an EKG which turned up negative, he decided, based on her facial features, that we should see the geneticist to test her for Williams syndrome. We didn't need the positive FISH diagnosis. Like all of you, we immediately went home and Googled and used WebMD to look up this syndrome we had just heard about. I was THRILLED to have a diagnosis. And what a blessing it is :). Through lots and lots of prayer, Eloise has managed to make it to 27 months without any surgeries or major medical problems. She began walking about a month ago. Hippotherapy has been the biggest advocate on her behalf-cognitively and physically. As a family unit we have our struggles, but have decided that it is God's will for Eloise to have a mother and a father who are married and devoted to one another and to our two precious girls. Eloise has an older sister, Nan (21 months older), who magically knows exactly how to treat her, and seems to be, at this point, unaffected by Eloise and her struggles/"extra" attention. As cliche as it sounds, I believe God doesn't make mistakes. He places special needs children into families for reasons; some I can't figure out, but I still believe it. Eloise causes us to slow down, and gratefully accept each day, one at a time. You all know what I'm talking about. These kids aren't your typical special needs kids-Kids with Williams syndrome are angels on earth, who are assured of their spots in heaven, and who make the world a better place.
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My Angel
On Feb. 4th 2010, my husband and I were blessed with a 7 pound 15 ounce baby girl. She is beautiful!! We got to take her home, but the doctors were concerned with her heart murmur. However, they said it could be monitored and she would be fine. When she was about 9 months old, we realized something was wrong. She didn't crawl, she didn't sit up, she didn't try to say words. Her doctor decided that she needed an MRI. The results showed that her brain was not developed properly. We then went to a neurologist. She looked at Avery and said, "I think she has Williams syndrome". She told us not to google it because we didn't know anything yet. Of course, like anyone else, we googled it. We knew right away that she had Williams syndrome. The blood tests came back and showed that she was missing the gene that causes Williams syndrome. From there we went to different specialists. Today, Avery is 2 and 1/2 years old. She is fun, loving and caring. She has had 3 eye surgeries and is still having problems with her eyes. The only other complications that she has are a few heart problems, slow speech, anxiety, gross motor delays, fine motor delays and issues with loud noises. We are very lucky. Avery is a special, unique child and we are blessed to have her!
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How I Proved A Fortune Cookie Right
On July 10, 1997, I became a mom. I had no idea what that meant at the time, but it wouldn't be all that long before I learned. Six weeks after my daughter was born, at her routine (and there would be no other routine appointments for years) well check visit, her pediatrician heard a heart murmur. Looking back, it must have been concerning to him since we were immediately sent to get an x-ray of her chest...which showed enlargement and from there we were sent to Boston Children's Hospital. Two VSDÂ’s, two ASDÂ’s, Aortic Valve Stenosis and Pulmonary Valve Stenosis later.....laymen terms; Â…4 decent sized holes in between her heart chambers mixing blood and every valve going to and from was narrow...Â…too narrow.
We were told to take her home, given the signs to watch for heart failure, booked an appointment in 2 weeks and were told to prepare for open heart surgery. After that, things get fuzzy. What I do remember is someone explaining something called Williams syndrome to me. The very first thing that I did was go home to google. At the time, there was very little out there information wise …and what was out there was pretty negative. In between dr appointments, blood draws, and the famous FISH test results, I googled and the googling got even worse once the results were in. My beautiful first-born daughter had William’s syndrome. She was 6 weeks old. I remember the dr saying the word. He was an intern actually. We had Chinese food for dinner that night and I had just opened my fortune cookie when he called. It read, “you will show what you are made of”. I still have that fortune.
So in the weeks that followed, in a postpartum haze, I went through the motions of motherhood.
At one appointment at BCH, one doctor said, “don’t expect much from her”. Well there’'s a challenge....
One particular morning, while I was sitting, googling, it hit me. I looked over at my baby girl, who smiled up at me, and it hit me. My baby was the same baby I brought home from the hospital. The same baby I knew that I loved from the moment I heard her heartbeat while I was pregnant. I shut off the computer, and never looked back.
Yes I mourned, as any parent of a child with a diagnosis does. You mourn the child you don’t even know, the child who hasn'’t become yet. But you mourn. In the years that followed I fought hard for my daughter. I spent all day with her at home and at her therapies. I saw what she could do first hand. I saw, and her therapists saw her reach goals; …sometimes on target, sometimes late, …but damn it, she met them. There wasn'’t a day that went by that she didn'’t amaze me. Sure, her brain works differently than the average kid…, but ya know what...she’'s brilliant and I’'ve said for years that when I grow up I’'d like to be her. The way she sees the world, the way she grasps things…...it'’s just amazing to me. This road as a parent of a special needs child was not easy. I threw myself into being her advocate, in making sure she got a fair chance at proving herself. Fifteen years later I still do. But ya know what? Her heart healed itself and 3 years ago she was declared “heart healthy. The cardiologist called her a miracle. As for that doctor who told us to not expect much? Guess what? I didn'’t listen. I expected everything from her and still do. She doesn'’t get a free ride at home or at school just because someone diagnosed her. For fifteen years now I'’ve stood behind her and fought for her to be judged on her own merits. She’s battled heart defects, a chromosomal deletion, learning disabilities, dyslexia, a thyroid problem, and labels of all kinds… and has come through it.
My oldest daughter taught me how to be a Mom, trial by fire, but I am the mother I am today because of her. Allison is spit fire, a dreamer and my butterfly girl.
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Dawson's Story
Dawson was born on April 12, 2007 at 3lb. 4oz. My pregnancy was difficult. I was first told that he had Down Syndrome from my AFP test and then was sent to a high risk specialist. I was 40 at the time so this wasn’t too much of a surprise, what was a surprise was that the umbilical blood flow in the cord wasn't good and I was immediately admitted into the hospital. They gave me steroids and were set to deliver at 1 pound 2 oz. The doctor said it would be a miracle if he made it, and then said lets all pray. The prayers worked because after 2 weeks, I was released and sent home on bed rest. I was induced early at 34 weeks and that is where our journey truly began. Dawson had the typical fussy colic associated with Williams syndrome, but being baby number five, I knew something wasn’t right. I was told he is just a preemie ... give him time. At nine weeks he developed inguinal hernias and needed surgery. During the procedure, he went into cardiac arrest. Everything that could go wrong did. I was heart broken; his kidneys were failing, he needed a transfusion and he developed a blood clot and needed insulin to control his pancreas. Family and friends gathered from all over to support us. One month later we were released to go home. His name means warrior, which is so fitting. He is my fighter. We were told he arrested from a condition called Long QT, which does exist in my family but is also prevalent in Williams syndrome. The genetic test was not done until two years later after Dawson began showing signs of scoliosos... another sign of Williams syndrome. After two years of being told we had one syndrome, we were finally diagnosed. Truly it was a relief to put a name to what was going on with him. He is my heartbeat and I wouldn’t change a thing. Dawson has made me who I am today...stronger. I fight harder. Live sweeter. Scoliosis is our battle at this time. We have major decisions to make. Dawson had an MRI almost two years ago to see the progression of the scoliosis. The pulse ox that should not be used in a MRI, was left on and his toe, and his great left toe was burnt off and had to be amputated. This caused him an extra challenge to walk, but I am proud to say he can run now. He overcame. I have never been prouder. So proud to be the mom to Dawson.
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Grayson Jon....Our Little Joy
Grayson is my first and only grandchild. He is the light of my eyes. He was born on June 8th 2011, he weighed in at 5lb 3ozs. He was born with a heart murmur that they heard at his 8 week check up. From there he went for testing to further check on the heart murmur and they tested him for Williams syndrome and he tested positive. It was a very scary road that we thought we were traveling and had many concerns for our precious Grayson. As we soon connected with many other Williams syndrome Families and researched and read we realized how blessed we were to be given a child with Williams syndrome. He is a true JOY in our lives and brightens our everyday. He does have his struggles and obstacles but he is doing remarkable and his health issues are minimal. But through all of the networking and families he is with the right doctors and headed in the right direction! I couldn't imagine our lives without him!
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Abby's Story
Abby was born via C-Section on November 14, 2006 weighing in at 6 lbs 7 ½ oz and 18 inches long. Abby spent her first 4 days in the NICU because she had trouble learning how to feed from the bottle. Abby also had terrible colic for the first 6 months of her life. She screamed and arched her back when feeding, only slept about 45 minutes at a time and only about 5-6 hours a day, so the other 19 she pretty much was crying and unhappy. So at about 2 months old she went to a pediatric gastroenterologist and he said she had a heart murmur. He told us to take her to a cardiologist to make sure there wasn’t anything more to it. Turns out she did have something more, it was called Coarctation and her scans showed she had a narrowing of the part of the aorta that carries the oxygenated blood to the rest of her body. So we took her to St Vincent’s Hospital in Indianapolis and they fixed her heart problem by going in behind her arm. She did well with the surgery but had a few problems with the anesthesia. But she was released 8 days later and at 2 years old we were told she was very healthy and that she only needed scans every 2-3 years. At that point our pediatrician told us that she wanted us to take her to get genetic testing because there were a few syndromes that carried congenital heart diseases – she said Turners and Williams syndromes. So back to Indianapolis to Riley Hospital Genetics and we were standing in the hallway waiting to get into the exam room and a doctor passed us and looked at Abby. A few minutes later another doctor came in and told us that the doctor who passed us in the hallway was 99% sure that Abby had Williams syndrome just by looking at her facial features. So she had the FISH test and it came back positive for Williams syndrome. I had been researching Williams syndrome and although it was hard to hear, at least we had a diagnosis and we had some idea of what to expect and how to deal with it. So we got her into Indiana First Steps program for physical and speech therapy and at 3 years old she started preschool and now she is starting Special Education Kindergarten in a few weeks! I am so proud of my little girl, she is growing and every day I see something new that she has learned. I am so thankful and blessed to have her as my child and as much as I hate to see her struggle, it just makes every little triumph that much more important and more exciting for me and her. And since meeting a lot of other parents and children/adults with Williams syndrome, I am even more blessed! Abby is 10 right now and the school told me she is considered to have a moderate/severe mental disability. But as long as she is learning I am happy. Abby loves to talk to people and she relates better to older people than her own age group, she loves to watch Veggie Tales and The Wiggles and she does have great musical abilities for her age. She amazes me every day and that will never change.
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Ryland's Story
Ryland was born on December 17th, 2008 after over 48 hours of labor, and a hard birth. He was 7 lbs, 12oz and a week late. Because of the hard labor he spent 10 days in the hospital (including Christmas) because he was jaundiced. When we finally got to bring him home we were overjoyed! He never really had any alarming issues until he was a year old. He wasn't a particularly fussy baby, and only had minor feeding issues, which I thought were typical for a lot of children. He was breast fed until he was a year old, and started solids at 6 months. He had a very severe gag reflex, but that was it. At a year old though, when he wasn't pulling himself up to stand or crawling, our pediatrician referred us to our local infant program. Long story short... They assumed he was autistic and referred us to the UC Davis Mind Institute. At 15 months he was too young for an official diagnosis of Autism, but recommended we do testing for other genetic disorders in the meantime. The very last thing he was tested for was Williams syndrome. It was positive. We were devastated. He learned to crawl after one session of PT, and walked at age 26 months....one month before his little brother!
We have been very lucky with Ryland. He hasn't had any big health concerns, eats like a typical toddler, and enjoys playing with his best friend/little brother. People often ask me if they are twins since they look so much a like and are exactly the same size! Ryland attends a special needs preschool in our school district... At age 3.5, he even rides the bus to school everyday. Since starting school in January, he has made tremendous progress. He's an excellent swimmer, and loves to sing and dance. He is always happy, says good morning or hi to everyone he meets, and says "how you?" he is the light of our lives!
