Extra Magical World Extravaganza!
Our Trip:
The purpose of Jamie’s Dream Team is to provide assistance and/or make distributions to or on behalf of qualifying individuals who are handicapped, disabled, terminally ill, severely injured or suffering from a serious medical condition, disease, or trauma. We are very excited to announce our newest program called “Extra Magical World Extravaganza”! The mission of this new program is to enrich the lives of children with Down syndrome and their families by providing a one-week-all-expenses-paid trip to Walt Disney World!
A prenatal or birth diagnosis of Down syndrome is often presented in a negative light, and can sometimes include a long list of medical diagnoses that are common with the syndrome. Some of these are congenital heart defects, vision problems, hearing loss, thyroid disease, leukemia, and hypotonia. In addition to these health risks, families are also made aware of the intellectual disabilities that accompany Down syndrome and the many therapies that the child will be offered beginning just after birth. Unfortunately, a prenatal diagnosis usually comes along with a conversation about having the option to terminate the pregnancy and a birth diagnosis can be overwhelming and scary for families who do not have prior experience with the syndrome.
Our mission is to enrich, unite, and empower families from the prenatal to childhood phases of life at a time when they need it most. From the time of diagnosis, families will be eligible to join the “Extra Magical World Extravaganza” program community! More than just an amazing vacation to look forward to, families will have the chance to build lasting relationships with local families who are living this beautiful journey that we call Down syndrome. The Down syndrome community has worked tirelessly to create a network of parents, caregivers, adults and children unlike any other. This journey can be overwhelming and these connections are crucial for providing the best quality of life for our kids and for raising awareness for the joy that they bring to this extra magical world!
Our Bios:
Each year, a new group of local families will be chosen to participate in the program. We are happy to introduce you to our 2022 Mouseketeers!
Meet Maddox!
Maddox is an 18 month old ray of sunshine. Like a large percentage of Down Syndrome children, Maddox was also born with a congenital heart defect known as an atrial septal defect which basically means he has a small hole between the upper chambers of his heart. Thankfully at this time, he doesn’t require surgery and may never. Maddox works extra hard at all his therapies (occupational, physical and soon to be speech) to meet his milestones. He is the life of the party, and everyone that meets him is enamored with his sweet spirit (although don’t let him fool you, he loaded with sass and attitude like any other toddler)! He loves playing with his fur-brother Maverick. He is the best snuggle buddy, his kisses are pure magic, and as they say, “extra chromosome = extra cute!”
Meet Bryson!
Bryson is a silly, loving, energetic 6 year old who loves playing with his little brother, Ryker. He was born with several health conditions along with his Down Syndrome diagnosis. Bryson had a hole in his heart, tethered cord syndrome, and bowel conditions that led to a colostomy. He also went into heart failure at 4 months old and had to undergo emergency open heart surgery. Bryson has also had to have a g-tube placed and has recently been diagnosed with autism. Even though Bryson has had many surgeries and bumps in his journey, he never lets it stop him from being his happy little self. He has already touched so many hearts and anyone who meets him falls instantly in love.
Meet Hope!
Hope is a spunky, loving 3.5 year old that is the adorable little princess to 2 big sisters and a big brother. She is also best buddies with her 2 year old niece. She loves spending time with her family, singing and dancing to music, and playing outside. Hope was diagnosed at birth with Down Syndrome, choanal atresia, and a congenital heart defect called Tetralogy of Fallot. She has undergone several surgeries due to these conditions. Hope is such a fighter and never goes without a smile, even during her latest and biggest battle with B-Cell Acute Lymphoblastic Leukemia. She had gone through nine long months of harsh frontline cancer treatment including chemo and long hospital stays. She is currently in her maintenance phase until April 2022, so her fight is far from over, but her family is hopeful that the worst is behind her.
Meet Leo!
Leo is an energetic, affectionate 3 year old. His smile is infectious as his eyes light up as he runs at you and yells “hugs!” Common among children with Down Syndrome, Leo was also born with a congenital heart defect. He had a very large hole that allowed blood to mix in all four chambers of his heart causing heart failure. Before his heart was fixed, he didn’t even have enough energy to cry or eat. He had his first open heart surgery to fix the hole when he was 11 weeks old but as of now, Leo is doing wonderful. It is still possible that he might need more surgeries in the future. Leo loves interacting with people, especially babies. He says “Hi!” to every stranger, and his smile melts your heart. He also loves chasing after his big brother, Henry (5) and wants to shadow everything that he does.
Meet Luci!
Luci is a fun loving 8 year old. Luci has a wonderful personality and loves making new friends. She is a very strong-willed little girl and a hard worker. Luci enjoys taking swimming lessons, going to school to see her friends and teachers, and taking trips to the petting zoo to feed the animals. Luci loves music and dancing; she also enjoys spending time with her older sister Lea. She enjoys books and reading stories about the Disney princesses.
Meet Rubi!
Rubi is a busy, curious, fun-loving 3.5 year old who is truly amazing. She lights up a room every time she walks into it. She loves being around mom, dad and her dog, Wrangler. Rubi loves music and dancing and playing with her friends. Just like any other toddler, her determination to be independent is in full force. Her pointer finger is always ready to tell you that she doesn’t want help. Rubi spent the first 75 days of her life in the hospital mainly due to feeding issues, which resulted in a g-tube. Currently, her parents use it only for backup because Rubi has made such progress. She has overcome so much medically since she was 2.5, and her parents are very hopefully that her g-tube will be removed soon.
Meet Abby!
Abby is an energetic 3 year old who her parents describe as a “sponge for adventure”. She is ready to go, learn, explore, tackle and dominate every obstacle that is placed in front of her. Abby lives with her mom, dad, big brother Oliver (5) and her dog, Coda. Abby, just like approximately half of the Down Syndrome population, was born with 3 small holes in her heart which, for right now, just require observation. She works hard at her speech, occupational, physical, and developmental therapies which consist of at least 10 appointments a week. Just like everything else Abby does, she tackles it with a smile. She is a little girl who loves big, plays hard, and shines bright in this world around her. Meet Zoe! Zoe is a sassy 3 year old who is full of spunk. She loves to dance, listen to music, play outside, and ride in her jeep. She loves to be big sister to her baby brother, Joey and is in love with her newest little sister, Ziva! Zoe was born with a small hole in her heart but thankfully, it doesn’t require surgery. She is working hard at all her therapies (speech, occupational and special instruction therapy) to continue doing amazing things.
Meet Kinley!
Kinley is seriously a one of a kind 4 year old. She is smart, inquisitive, driven, and eager to learn. She is always looking for what she will do or where she will go next. She draws people in with her smile and carries a sense of happiness everywhere she goes. This is Kinley most of the time, but she also can be quite hard headed and stubborn. She can fake a tantrum like a Broadway show and likes to be very independent. She also had open heart surgery to fix 2 holes in her heart when she was 3.5 months old and is doing quite well.
Meet Claire!
Claire is a 4.5 year old warrior who is the true definition of the word. She is best buddies with her big sister Hailey and her little sister, Carly. Claire was born with a condition called VACTERL, which is a condition that causes a group of birth defects found together. For Claire, this consisted of heart defects (requiring surgery) spinal cord tethering (requiring surgery) and esophageal atresia (which has resulted to Claire being on a g-tube her entire life). Even going through all this, Claire doesn’t let it slow her down. The most recent battle that little Claire has had to endure is being diagnosed with Acute Lymphoblastic Leukemia the day before her baby sister was born. She is currently in active treatment with the finish time in late 2022 or early 2023. Despite all this, Claire is still almost always smiling and laughing.
Meet Blake!
Blake is named after a dear friend who lost a courageous battle with cancer. She is an angel that every day reminds her family what life is about. She is happy and strong willed. When she was born she was placed into the NICU, and one month later we found out she needed open heart surgery. At 5 months old the surgery took place. Things began to look like she may need a pacemaker and her heart was having trouble finding rhythm. It was like she heard us talking because the next morning that became a distant memory and four days after her heart surgery we were going home. She has become so precious to so many people. Her love for Disney at 20 months is amazing. A world without Blake is not one we can even remember.
Meet Aiken!
Aiken is 4 years old and lives with his mom, dad, and little brother, Sawyer. Aiken surprised his parents by having a Down syndrome diagnosis when he was born! Aiken has been working with therapies from the time he was one month old, and his strength shows as he runs, climbs, jumps, and rides bikes with his brother. Those 12 therapy sessions each week really pay off! Aiken also attends preschool where he gets to play with other kids, learn about numbers and letters, and do crafts! Aiken can’t wait to meet his favorite characters from Toy Story and Frozen!
Meet Hunter!
Hunter is known to his family as “tiny but mighty” He is just 19 months old and from the very beginning he proved that he was a force to be reckoned with. At 35 weeks, Hunter arrived via emergency c-section weighing only 4 lbs. due to an intracranial hemorrhage. Hunter was born with a few congenital heart defects, but doctors are optimistic that they will not require medical intervention. Additionally, he was diagnosed at about a week old with Hirschsprung’s Disease which is caused by the absence of nerve cells in the bowel resulting in a temporary colostomy. He had a reversal at 6 months and now his family says that they are thankful for every dirty diaper! Hunter has a never-ending supply of love to share. He loves being together with his mom, dad and big sister, Aslynn. He loves running and never seems to stop moving from morning to night.
Meet Holland!
Holland is a sweet, smart, funny 2.5 year old princess who lives in Scott Twp. She loves watching Sesame Street, enjoys playing outside with her dog Rocky, and will dance as soon as she hears the first note of any music. She was promoted to big sister in 2020 and totally adores her baby sister. Holland receives speech, physical, occupational and developmental therapies. While Holland’s milestone timeline may look a little different than other kids her age, she never ceases to amaze Mom and Dad.
Purse Raffle Information:
Our first fundraiser for Jamie’s Dream Team and the #ExtraMagicalWorldExtravaganza2022 is an incredible handbag/cash giveaway!
Each day for 7 days, a winner will be selected and may receive either high-end handbag of their choice from the selected brands (valued up to $2,000) AND $1000 CASH OR a $1,500 all-cash option!
Winners may choose from Salvatore Ferragamo, Burberry, Chloé, Balenciaga, Valentino, Louis Vuitton, and Stella McCartney.
Each $20 ticket has 4 chances to win each day! Only 2500 tickets will be sold, and the winning number is taken from the PA Pick 4 Lottery the week of October 1-7, 2021.
Comment on this post or send me a direct message to purchase your ticket!
Proceeds will fund the Extra Magical World Extravaganza 2022, which provides a one-week all-expenses-paid trip to Disney World for children with Down syndrome and their families.
Top Golf Information:
Our Top Golf event on Thursday, September 30, 2021 is the largest fundraiser for this trip and will provide funding for plane tickets, hotel reservations, and park passes. With your help we will be able to send 14 families on an all expenses paid vacation to Disney where they can unwind, connect, and create memories that will last a lifetime. Your contribution is tax deductible, and while sponsorship tiers are explained in the body of this packet, a contribution of any amount is appreciated. If sponsorship isn’t something you are willing or able to do, we are also collecting silent auction items, and even encourage you to consider fundraising and/or putting together a team of six to attend.
[tpath_button url=”https://www.jamiesdreamteam.org/file/2021/06/Top-Golf-Sponsorship-Packet.pdf” style=”primary” size=”large” color=”#ffffff” hover_color=”#ffffff” bg_color=”#1e73be” bg_hover_color=”#4687bf” border_width=”” border_color=”” border_hover_color=”” icon=”” icon_pos=”left” extra_class=”” animation_type=”none” animation_delay=”500″ target=”_blank”]View Our Sponsorship Packet PDF[/tpath_button]