Richie’s Story
Our beautiful son Richie was born six weeks early, and he was not breathing on his own. After two weeks in the neo-natal ICU, and several transfusions, his wonderful physician told us that Richiehad a rare and random genetic disorder called Prader-Willi syndrome. He wisely informed us that this was the hand we had been dealt, and that we should take him home and learn to love him. And so, after six weeks in the ICU, with wires still attached to him, in the middle of a miserable, howling winter, we finally brought Richie home.
Our world changed forever. We learned about special needs, IEPs, regional centers, and the hardship of fighting the system, constantly being denied what Richie was entitled to, even by those who were supposedly helping him. But we also learned about support groups, the kindness of strangers, the strength of parents who keep on fighting, and, of course, unconditional love. More recently we learned that Richie is also autistic.
Being older parents we worried about his future and who would take care of Richie after us. In 2008 we created the Richard de Lone Special Housing Project, recently renamed Prader-Willi Homes of California, and began raising funds to build our dream of a specialized home for individuals with Prader-Willi, with the help of our amazing friends from the church of rock and roll … Elvis Costello, Ry Cooder, Bonnie Raitt, Boz Scaggs, and so many more.
The years have not been easy for Richie. He has been demitted from three group homes, the last of which, though specifically designated as a Prader-Willi Group Home, was the worst of all, a practically Dickensian home of ignorance and neglect. When they could not give him proper, best practice care, they gave him a 30-day notice instead! Luckily as a last ditch effort, desperate, distraught, and scared, we were able to find Lynn and Darla, a Supported Living Services agency that was able to provide Richie with soulful 24/7 care. But it came at considerable cost. We had to buy a condo and now have to pay for all his living expenses, at the same time that we lost most of his financial support from Social Security. But now he is happy and well cared for by his amazing staff. They understand Richie and love him for who he is.
We never thought that Richie would end up costing us and the state so much money, but the truth is good care doesn’t come easy or cheap! That is why we are still pursuing our dream of creating state-of-the-art residences for people with PWS. For though Richie may not need help now, we know there are so many who do, and who need and deserve a great place to live – as we say, heaven on earth.
-Austin de Lone