It’s all for the Love of Lee: Parents hope to build special room for adopted son with muscular dystrophy
BERWYN – Margarita and Jaime Rivera are the type of parents who are almost too good to be true. To their adopted children, brothers Sal and Lee, and daughter, Angelica, they’re the rock that a child’s world stands steady upon, a river of unquestionable love and a golden fleece blanket of security.
To many of their family, friends and members of St. Leonard‘s parish, they are good people who could really use some community support. The family hopes to build a handicap accessible bedroom, bathroom and install ceiling lift to help their son, Lee, live a more independent life. Lee, 9, has Duchenne muscular dystrophy and the time is coming when such an addition will not be a luxury, but essential to his well being. There is no cure for DMD and most patients don’t live to be 30 years old.
Luckily, there are a number of people in their community working to make the family’s dreams come true.
A fundraiser, For the Love of Lee, is planned Aug. 16 at St. Leonard Church in Berwyn, where parish members will hold raffles and a silent auction at the event.
There also will be a walk for Lee at Proksa Park on Sept. 6, with a softball game between local police and firefighters to raise money. Supporters are hoping to raise $50,000, which is the expected cost for the addition.
Meanwhile, the Riveras have created a happy home for three children who could have just as easily faced a much different fate.
Lee was 3 and his brother, Sal, was 2 when the Riveras got a call from Wendy’s Wonderful Kids, The Dave Thomas Foundation for Adoption, that they were eligible for adoption.
“When I first saw Lee I knew there was something going on because of the size of his calves,” Margarita Rivera said. “He was tripping a lot and having a hard time climbing steps. It was two weeks after we met them for the first time [that] they moved in with us. We waited for all the paper work, I started making calls for doctor appointments for Lee, because I knew something was going on. Two weeks later we got the diagnosis of Duchenne muscular dystrophy.”
The diagnosis just strengthened their resolve to continue with the adoption, Rivera said. Currently, Lee’s heart, his spine and his lungs are affected by the aggressive disease. The curvature of his spine has begun and Lee experiences daily pain in his lower back and at the top by his neck. He uses machine to clear his lungs on a daily basis, as well.
“There are many times we have had to rush him to the hospital because, for no apparent reason, his heart begins to race,” Margarita said. “The sad thing about this illness is that as he continues to get weaker and weaker, his mobility continues to be compromised. The day will come when I will put him to bed and the next morning he will no longer be able to walk.”
Each morning Margarita has to stretch Lee’s legs through a range of special exercises. His lower extremities are stiff in the morning, his feet turned inward, and need to be massaged to get him ready for the day, Margarita said. Lee’s brother, Sal, often helps with the routine. She also needs to carry the growing child on a regular basis – something that will only grow more difficult, if not impossible, for Margarita.
Through it all, the brothers are still just boys, racing from one activity to another, competing with video games, plastic bowling sets and just about anything else.
“It’s like having a tag team,” Margarita said.
Despite the fact that he’s just a kid, the 9-year-old boy has no illusions about the hardships he will face in the years ahead.
He writes: “My mom and dad want the best for me. I know that soon I will be in a wheelchair permanently, as a matter of fact, I already use one to go to and from school. My mom and dad would like to build an addition on our home, but cannot afford to do so. They dream of two special rooms just for me: a bedroom that would have a special machine to help me get in and out of bed and a bathroom that would allow me to roll my wheelchair in and shower. I really want to become as independent as I possibly can. Would you kindly help my parent’s dream for me become a reality?”