Jackson is 16 months old and is the most laid back, happiest, funniest little guy you'll ever meet. Despite all the blood draws, surgeries and MRIs he’s been through, he has a very positive attitude. He loves new places and new people and is especially fond of animals. He loves to be read to and will bring book after book to his mom and plop right down in her lap, listening intently to every word until the book is over. He needs a minimum of two stuffed animals to fall asleep with (his current favorites are a Bengal tiger and a tiny cow with giant horns). His big brother, who is 3 ½, is his favorite person. No one can make Jackson laugh like his big brother. Even during his lengthy stay in the hospital he remained full of laughter and light. Jackson has beautiful blue eyes and amazing blond hair and a smile that just steals your heart!
Although there was a time when Jackson's AFP levels skyrocketed and doctors thought they saw a mass on his liver, Jackson has been blessed to never have been diagnosed with cancer. Jackson has had surgery to place a g-tube because of his feeding issues as well as his severe hypoglycemia. He may need a tongue reduction.
Even spending lots of time alone and at the hospital, Jackson’s attitude never changed, and he was happy and smiling as always. When he was finally discharged to come home he was behind on his physical milestones. He was 5 months old and couldn't even roll over. His family did exercises with him every day and little by little he became stronger. Once he learned how to sit up by himself nothing could stop him. His mother worried that he might need years of physical therapy to walk, but at 16 months he is all caught up!
Jackson’s mom, Phoebe, would tell the parents of those that have been newly diagnosed with BWS that the future is bright. There will be hurdles ahead and sometimes the journey will be long but they are never alone and their child is much stronger than they know! When Jackson was first diagnosed she went straight to the internet and searched BWS and got so much misinformation that was discouraging. It was only after joining a BWS support group that she really learned about the syndrome and had hope.
His 3 ½ year old brother talks about how happy he is to have "Baby Jackson living at home with us, instead of living in the hospital". He tucks him in every night and says "Good night, Mr. Jackson, you're such a good little brother.”
Information provided by Phoebe Lara, Jackson’s mom