The JAKE (Jachin’s Angel Kisses Everywhere) Foundation was founded in 2014 as a way to give back to a community that has given so much to the Jordan family and other local families. Jachin Jordan was born in June of 2007 with a port wine stain birth mark covering more than 75% of his body. It was soon discovered that he had a rare neurological disorder called Sturge Weber Sydrome (SWS). The characteristic birth marks (Angel Kisses) are a distinct component of SWS. Additionally, SWS can result in progressive neurological deterioration. The impact of this on Jachin’s family, as well as other children and their families, was and can be significant.
The JAKE Foundation was formed as an extension of the previous 7 years of fundraising by its founders to benefit children with SWS and other neurological disorders. Additionally, through those efforts, we recognized needs for other children in our community and strive to also provide support for these kids and their families.
Jachin was born on June 26th, 2007 after a completely normal pregnancy. As soon as he was born, we knew he was different. Different is good, but it can also be frightening. More than 75% of Jachin’s body is covered in a port wine stain birthmark, also known as angel kisses. Within his first week, he was diagnosed with glaucoma in both eyes, and when he was 10 weeks old he had his first seizure. He was officially diagnosed with Sturge Weber Syndrome (SWS) at that point. Throughout his first three years of life, Jachin had many recurring seizures and breathing difficulties that resulted in hospital stays, different types of therapy, eye surgeries, and (too many to count) laser surgeries to help reduce his birthmark to avoid future complications and reduce its appearance. All of his medical procedures and hospital stays have been within the UW system and the American Family Children’s Hospital, which coincidentally opened the summer of 2007. We are so grateful to be able to live in the Madison, WI area and to be able to have this fantastic resource so readily available to us. Currently, Jachin is going on 5 years of being seizure free, due to seizure controlling medication. While we don’t know if he will stay this way, we thank God for every day he remains seizure free – as this has a huge impact on his development and quality of life.
In the winter of 2013, Jachin was granted a wish from Make-A-Wish Wisconsin. He wished to go see Mickey Mouse on a big boat- and our family was able to go on a wonderful Disney Cruise. After seeing the impact this had on Jachin and our family, it became part of our focus to help other kids and families to also receive this life-changing experience.
Sturge-Weber syndrome (SWS) is a vascular condition where a child is born with a port-wine birth mark and is found to also have abnormal blood vessels in their brain and in their eyes. These abnormal blood vessels cause problems for that child, such as seizures, strokes, weakness and vision loss, and a range of intellectual challenges. They can have other medical issues such as endocrine problems, and psychological, mood or behavioral difficulties. The presence of a port-wine birthmark involving the forehead or upper eyelid raises the suspicion of SWS. These children must be followed very carefully and cared for by experts in order to diagnose brain and eye involvement and treat complications as they arise. A port-wine birthmark can be confused with the stork-bite (also called angel’s kiss) birthmark or with a capillary hemangioma. A dermatologist should examine the birthmark to confirm the diagnosis. (reference-http://www.kennedykrieger.org/patient-care/patient-care-centers/sturge-weber-center/about-sws)
Statistics- Seizures develop in 75 to 90 percent of all children with the syndrome. The seizures often start before a child reaches age 1 and may worsen as they get older. About one-third of children with the syndrome have congenital (present at birth) glaucoma on the side of the face with a port wine stain. The total number of people with SWS is not known, but estimates range from one in 40,000 to one in 400,000. (reference- http://www.childrenshospital.org/conditions-and-treatments/conditions/sturge-weber-syndrome)
Cambria (Cammy), age 6, from Madison WI, wished to go to Walt Disney World® Resort. Her wish began with a surprise limo which drove Cammy and her family to the airport. They flew to Orlando where they stayed in their own private bungalow at Give Kids The World Village, a special resort designed just for wish children. Cammy loved riding on Dumbo and the Flying Goofy Roller Coaster. She and her family returned home with a powerful experience, giving them hope, strength, and joy.
Cole, age 5, from Windsor WI, wished to have a fire house themed tree house. His experience began with meeting an architect, and together designing a fire station that included a place to park a fire truck, a fire pole, and a look-out deck in a tree in his backyard. He and his family were sent to Chula Vista Resort for an overnight stay so the tree house could be set up. When they returned, Cole was welcomed to his new fire station with a special call from Dane County dispatch and firefighters from the Middleton fire department arriving at his house in their ladder truck. They presented him with a power wheels fire truck and a toy Dalmation dog. This wish will give Cole and his family hours of enjoyment along with hope, strength and joy for years to come.
Haley, age 10, from Monroe WI, wished to go to Walt Disney World® Resort. Haley’s wish began by being surprised by a limo which drove Haley and her family to the airport. They flew to Orlando where they stayed in their own private bungalow at Give Kids The World Village, a special resort designed just for wish children. They explored Magic Kingdom®, Disney’s Animal Kingdom® Park, Epcot® and Disney’s Hollywood Studios™, discovering all the magic of Disney. Haley’s highlight was going to the Mickey’s Very Merry Christmas Party which included a special Christmas parade and fireworks! She and her family returned home with priceless memories and a healthy dose of hope, strength, and joy.
Alexis, age 17, from Janesville WI, wished to to go Italy to see the Colosseum and other historic places. His wish began with a surprise limo which drove Alexis and his family to the airport. They flew to Rome, Italy where they stayed for five days and experienced all the history and beauty of this Italian city. While in Rome, they visited the Forum, the Spanish Steps, and Trevi Fountain. They also took a tour of the Vatican Museums and the Sistine Chapel. The highlight of the trip was receiving a tour of the Colosseum that included underground chambers and the arena. Alexis and his family said “ciao” and returned home with a powerful experience, giving them hope, strength and joy for years to come.
Anna, age 8, from McFarland, WI, who is living with a brain tumor, wished to have a family reunion in the Wisconsin Dells at the Kalahari Resort. Anna and her family drove to the Dells where they met grandparents, aunts, uncles and cousins. They spent the three days at the waterpark, theme park, the Spa Kalahari, and the Tibavati Wildlife Park. The highlight of the trip was being able to spend time with her extended family, many of which she doesn’t see often. Anna’s mom said, “Make-A-Wish is one of those organizations that provides kids like Anna the opportunity to feel really, really special and give them more reasons to smile than they might otherwise have had.”
Ilya, age 13, from Verona, WI, who is living with acute myeloid leukemia, loves animals and wished to to to Walt Disney World® Resort and stay at Animal Kingdom Lodge. Her wish began with a limo trip to the airport. They flew to Florida where they spent a week visiting all the Disney Parks, including seeing animals at Animal Kingdom® and SeaWorld, and joining Disney pirates on a moonlit fireworks cruise! Ilya and her family returned home with photos, souvenirs and priceless memories, some of Ilya’s favorites were the rides and great food. Her wish definitely provided her with hope, strength and joy for years to come.
Isabelle, age 17, from Waunakee, WI, who is living with a life-threatening digestive condition, loves reading and music, and helping others, wished to go to Colorado to see the mountains. Her wish began with a limo trip to the airport. They flew to Denver, Colorado and stayed at the beautiful Ritz-Carlton Bachelor Gulch in Avon. She and her family experienced a gondola ride, and a beautiful carriage ride through the city, as well as dining at a variety or restaurants. One of Isabel’s highlights was skiing on a sit ski!
Reflecting on her wish, Isabelle said, “This Make-A-Wish trip has provided me relaxation. It’s been the first time in months I have had days where I am not concerned by my health. My mind is able to be in a realm of peace and living in the ‘now.’ Seeing the mountains and experiencing these things has heightened my zest for life. I now savor each moment even more. I have always loved life, even when sick. I love to find the peace within the fight. And to grasp onto that peace within the fight. And this trip defined that even more. I look to the mountains and back to my family and it confirms my constant belief, life is always so beautiful.