Dystroglycanopathy Muscular Dystrophy limb girdle with learning disabilties due to POM T 2 mutation.
It doesn't have a wiki page, but here is a sort of explanation of it.
Andrea's son, Calvin, has had it for a long time. In fact, he may be one of the oldest survivors of it. But it will kill him eventually.
If something else doesn't kill him first....
I'm not going for an inspiring story of courage here. Oh, there is courage in abundance, but this is a courage that is being torn apart every time Andrea has to try to deal with a system that seems to be set up specifically to frustrate her and drain her of her strength to cope.
Andrea's story may be familiar, as I've written about it before. She is not unaccustomed to trying to thread her way through a labrynth of red tape to get her son and her family the help they need. When Calvin's SSI did not show up at the first of the month, she sighed, left messages with her economic support worker and her SSI worker, and borrowed the rent money from her mother, who is also on SSI. The economic worker, at least, called her back. The SSI worker just sent her a bunch of forms to fill out. If it wasn't for programs like "Spirit of Christmas," "Shop with a Cop," and "Toys for Tots," there would be no Christmas in their houshold. This type of thing is nothing she can't handle.
But, when she took her son into the ER, because he has been in continuous pain for twelve hours, they took some scans, decided he was constipated, and sent him home with a stool softener. Calvin, most uncharacteristically, begged to stay in the hospital because he hurt so bad. But there didn't seem to be any need.
The next day, a very concerned ER doc called Andrea and mentioned that the scans had shown a mass on his left kidney.
Andrea fainted. Her oldest daughter called me, frantic, because her Mom had fallen and hit her head.
You see, kidney cancer runs on both sides of Andrea's family. Her mother just had a kidney removed this last summer, due to cancer.
Immeadiate appointments followed. The pediatrician was, frankly, visibly worried. She immeadiately tried to set up an appointment with a specialist, but none who accepted the family's state insurance was available until March. MARCH. Calvin's heart specialist didn't seem concerned at all, but this is the same guy who, with no tact whatsoever, advised Andrea bluntly to start "making plans" for Calvin. Perhaps he meant well, wanting to make sure Andrea knew how serious Calvin's condition is, but that was a cruel way to approach it. He hadn't even looked at the scans.
Calvin, in the meantime, is in a great deal of pain. There may be a very good medical reason why they are not giving Andrea a prescription for pain meds for him, but no one seems to be able to explain it to her. Deep down, I have to wonder if it has anything to do with the rampant prescription drug abuse in our county and Amber's clear poverty. Perhaps that makes her a risk, who knows.
But Calvin is in pain. And Andrea is constantly on the verge of tears, because she cannot help her child, her sweet boy, feel any better. She is baffled as to why they will not admit him, to help with pain management. But they won't.
Then on Saturday, as Andrea puts it, an angel called her.
Her mother's kidney specialist/surgeon's office called their shared cell phone to remind her mother of an upcoming appointment. The family trusts this doctor, and Andrea asked if she could leave him a message with some questions about her son's condition. As soon as she finished telling the administrator about the situation, she was immeadiately connected straight to the doctor. He is very familiar with the family health history, asked a few quick questions, piddled around on his computer for a few minutes, then informed Andrea that he had shifted some appointments so that he could see Calvin on January 3.
Andrea has a new slim line of hope. Her caseworkers can seem to do nothing for her. Calvin's doctors can seem to do nothing for him. But one doctor has made an effort to listen to her and respond as close to immeadiately as is possible. And that was enough to give her an infusion of courage.
Sometimes, that's all it takes.
Calvin has another appointment this week with a specialist and his pediatrician. Andrea has asked me to go along with her, as an advocate, to help her get some answers. Calvin was sobbing on the couch, trying to get comfortable, when we had this conversation. His younger sisters were singing to him, to help him feel better. His grandmother was making a milkshake for him. I prayed with them, and I've cleared my calendar for the week.
How many times can a person run into brick walls where there should be paths made straight? How often can a person be failed by the very people who are paid to help her. I don't know. I can't think very dispassionately about this. I keep wanting to go find the case workers and drag them bodily into Andrea's living room, so the urgency of their lives becomes apparent. I understand crushing caseloads. I understand compassion fatigue. I'm torn between empathy and anger. Andrea is just down to anger, and who could blame her.
Andrea has little kindness in her life. She asks for so little, but needs so much. And I KNOW there are programs out there to help her. The county seems to be useless, but I KNOW there are state, national, and private programs out there to help Calvin and Andrea. Scott Walker could not have destroyed them all. And I'm going to try to find them. I'll be a googling and phone calling machine. Its not my skill set, really, but its time I learned. I suspect I will have other opportunties to use them in the future.
Calvin will die young. Andrea knows that. Calvin knows that. He once declined to fight with a bully at school because "life is too short to hurt other people." But shouldn't he have the chance to live, before he dies?
Respect. Human dignity. Care. Communication. Is this too much to ask? Andrea believes that it is. I hope and pray that I may show her otherwise.
Peace.