ALEXIS

ALEXIS


This is sort of cheating, or maybe it just feels that way. Ten years ago, I wrote a story very much like the one I write now, which feels like the cheating part.

It is the same story, just 10 years later.

The problems are the same, except maybe a little more complicated. The proposed solutions are pretty much the same—complicated, unsatisfactory, baffling, illogical, late, bureaucratic, infuriating, even cruel.

And, the efforts are the same—heartfelt, heartwarming, heroic; then, because none of them are coordinated or organized or official, a little unprofessional, too. And only temporary. And really inadequate. And they are worthy of a lot note than this, because you would think this situation and others like it—thousands of situations—couldn’t exist; just couldn’t be, wouldn’t be, in this world of expertise, promises, achievement, campaign, money, dedication.

Yet this situation is; it exists; it, “be’s,” and many variations of it continue to be; always; and always, always, always, it is.

So, same as 10 years ago, here is the story.

Lisa Cardinale was in her freshman year at Suffolk Community College when, on July 19, 1996, following a perfectly normal pregnancy, Lisa gave birth to Alexis, who weighed 7 pounds, 12 ounces and seemed fine, until three months later, when she suffered her first seizure.

Both arms flailed uncontrollably, and her legs froze in a 90-degree angle to her body. The family took her to the hospital, saw one specialist after another, saw a neurologist who prescribed an anti-seizure medication and jokingly said she shouldn’t drive, because the medication was for adults.
After the seizures, family member noticed that Alexis was cringing when in the presence of bright lights.

She didn’t look straight at people any more. She didn’t close her eyes any more. They consulted one doctor after another. They visited many different hospitals, from Stony Brook to New York University.

“Somebody in Queens Hospital put her on a ketogenic diet, a metabolic diet specifically for seizure control.” Mary Cardinale (Burke, now) said at the time. “It reduced them by about 90 percent.

“By that time, though, we had learned that she was microcephalic, which means she had a smaller than normal brain. At first, they thought she might be hydrocephalic, and they did spinal taps to relieve the pressure, but it turned out she wasn't hydrocephalic.

“She’s been misdiagnosed many times,” Mary Burke said. “She's had a bolt put into her brain to monitor brain waves. She's had open heart surgery to repair a large hole in her heart—this, by the way, after one pediatric cardiologist said there was nothing wrong with her heart. Another just refused to operate on her because he had no fatalities on his record and the baby had so many other problems. He said, ‘Why do you want to put her through heart surgery, anyway?’

“The point is,” Mary Burke told me 10 years ago, “there are things she needs. Not luxuries, but the kinds of things that might make it easier for us to care for her, or make her life just a little more comfortable for her. She's going to be 4 [now, 14]. She's outgrowing the regular car seat. We need a custom bed for her. She has her bath literally in sections on our kitchen counter. She's dead weight, and we will most likely need a hoist for her soon. And should we not take Alexis out of the house because no stroller can accommodate her safely any longer? Even something as simple and obvious as diapers, she'll always need diapers. The expense is tremendous.”

Mary Burke continued 10 years later: “She is now 13 and we are having our second fundraiser for her, [Sat. June 19, 2010 at the Holiday Inn Ballroom, Sunnyside Boulevard, Plainview, NY 11803, called, ‘The Love for Alexis Trust Fundraiser, A Night of Comedy’] because as you see, nothing changes. Alexis must have all her needs met, and as she gets older, it gets harder. We are hoping you may mention this to your readers.

“Alexis will be 14 this July 19th. She was finally diagnosed with Rett Syndrome, CDKL5 the most severe form. We are still carrying her, still changing her diapers, still feeding her. It is unreal. We are still battling for therapies.

“Alexis now lives 15 minutes from me in a house that is run by UCP. We get Alexis on weekends and holidays and visit her often to make sure that all things are running smoothly, which is important when your child is not living at home and has no voice to let you know how things are going. It is a sad life, but, we do the very best we can for our girl. We need a hydraulic lift in our house now for Alexis as I can no longer carry her nor can her mother.

“Alexis can't help herself at all in any way. We have had our bathroom adapted for her showers, we have a special shower chair and had doors put into her room so we can wheel her into our home. We bought a used and, yes, beat up van for her that I need that show, “Pimp My Ride’” to re-do this van as we cannot afford a newer model (the van is 1999 Ford), if you know any of those guys.

“We need ceiling lifts. The list goes on and that's why we need fundraisers for Alexis. Unless you are wealthy and we are not, we cannot do these things for Alexis and we need to have her with us as she is our girl. Ed, Alexis is like having a real live angel in our lives that gives us the strength to go on and we are blessed to have her in our lives, but, we need help. Thanks to you for your help.”

Write this down: “The Love for Alexis Supplemental Needs Trust P.O. Box 2701, North Babylon, NY 11703.”