Despite being born with a rare form of congenital muscular dystrophy that took so much from him, Jack radiated love every day of his life.
“Although Jack was unable to walk, or breathe without the help of a ventilator, or speak the words his mind so clearly held, Jack woke up every morning with a smile on his face and eyes that sparkled with the anticipation of a new day,” said his mom, Ann.
During Jack’s many stays at Ryan House, Ann usually stayed with him and enjoyed the quiet time in the family suite. It was a treasured gift for Ann to enjoy a night’s sleep without interruption. The staff and volunteers would read to Jack and play music for him. The Beatles were his favorite. Jack would watch the Beatles on YouTube and Danielle, the harpist, would always play Beatles tunes for him as well.
Jack also liked to dance. “One of the volunteers would take Jack to the music room, turn on the player piano and dance with him in his wheelchair,” Ann said. “He loved that.”
Ann appreciated the love, care and compassion that Ryan House provided her family, as well as the ability to meet other Ryan House families who shared similar journeys.
Jack died at Ryan House at the age of 15 surrounded by those who loved him.
“He had eyes that smiled and stole your heart away,” said his mom, Ann.
3-year-old Annalise and 5-year-old Bryce have a rare form of Leukodystrophy, an incurable neurological disorder that limits the body’s ability to function by interrupting signals from the brain. When Bryce was diagnosed and then later Annalise, Tammy and John Clayton had to quickly adjust their lives to manage their conditions and 24/7 care while still managing to maintain the needs of their three older children. A stay at Ryan House gives the Claytons a chance to share time as a family without having to worry about giving medicine or preparing special foods.
“The Care Team takes over Bryce and Annalise’s care,” Tammy said, “I can spend time snuggling and playing with Bryce and Annalise as a mom instead of caregiver. Ryan House has also helped our older boys realize that they are not alone in having siblings with special needs. John and I have also become very close friends with some of other parents that we have met.”Annalise loves the playground and the fact that she is able to go up on it in her walker all by herself. Bryce loves to be outside and chase his brothers as they ride the power cars around the playground. They both love the dogs that come to visit, the pool and the sensory room.
Cade and Colby have Duchenne Muscular Dystrophy, a weakening and deterioration of the muscles. With your heart and respiratory system being a muscle and your spine requiring muscles to hold it up, the 11-year-old twins have bodies that just cannot keep up. Starting out as active kids, who crawled until they walked and walked until they ran, they have also witnessed their older brother, Ethan, endure and pass away from the same condition at 25-years-old. Shortly, after his death, the twins found a message from Ethan giving them advice on how to get through this. Sadly, each time they listen, things become clearer. "Learning about Ryan House was a huge emotional release for me," mom, Amy said. "Before Ryan House, some days were dark and scary but now I have a ray of hope. With just two days rest I know I can go on and do anything."
Meet our Ryan House Shining Star, Trinity
Shortly after learning she was pregnant with triplets, Heather was told her three children, Sebastian, Trinity and Estellah, had only two placentas. At 28 weeks, Estellah passed away in utero and Trinity began having strokes and her kidneys stopped developing. While Sebastian was born healthy at 35 weeks, Trinity was diagnosed with Cerebral Palsy and terminal renal failure with a life expectancy of 15 months.
“The day I stepped into Ryan House is the day I became a woman again,” Heather said. “When you have a child with special needs you not only become a nurse and caregiver but also an advocate, making all the hard decisions. Now a single mom, I don’t have someone to talk to or share things with. Ryan House has given me the security and confidence to go forward. We are progressing every day, hopefully there will be no more cloudy days but if there are, well, it’s ok.”
When Trinity is at Ryan House she loves spending time in the sensory room with volunteers. You can also find her strolling the halls and the fully accessible playground.
At birth, William George Leon weighed only two pounds, 14 ounces and just 14 inches long. He was born with an unknown genetic syndrome, with multiple congenital anomolies (birth defects) and was diagnosed with over eight rare medical conditions. Now 18-months-old and weighing 18 pounds, William has endured 15 hospitalizations, eight surgical procedures and has 14 core physicians following his medical care.
William is the sweetest boy, has a tiny little smile and laugh that would light up anyone’s world. His big sister, Isabell, also has special needs and medical issues including a heart defect, hearing and visual impairments, as well as overall developmental delays. The family feels very fortunate to be able to take William to their beloved Ryan House especially when Isabell is at the hospital for another surgery. “Every night we are reminded of the gifts in our life,” mom, Crystal, said. “Among them are Isabell, William and Ryan House.”
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