R.I.P. Lorenzo Odone 1978-2008

The man whose parents' battle to save him from a nerve disease was depicted in the movie "Lorenzo's Oil" died Friday at his home in Virginia, having lived more than 20 years longer than doctors had predicted.

Lorenzo Odone, who doctors had predicted would die in childhood, died one day after his 30th birthday, said his father, Augusto Odone.

Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents the disease -- caused by a genetic mutation that causes the neurological system to break down -- would lead to death in two years.

The disease leads to the accumulation of substances called very long chain fatty acids in cells, which damages the material that coats nerve fibers in the brain.

A study published in 2005, based on research with 84 boys, showed that a treatment made from olive and rapeseed oils -- patented by Augusto Odone -- can prevent onset of the disease's symptoms for most boys who receive an ALD diagnosis.

Odone plans to take his son's ashes to New York to mix them with those of his wife, who died in 2000. Then, Odone said, he will sell his home in Fairfax, Va., and move back to his native Italy.

(Taken from here.)

I remember seeing this movie shortly after it first came out when I was in high school. I watched it again years later, after having Syrina, and it spoke to me in ways that it never could have had I not had a child with special needs. I remember thinking to myself that if I knew of something that would make Syrina's life more full, more 'normal,' I would go to any lengths I had to in order to make that happen for her. I could finally relate to the stress, the frustration, and even the joy those parents went through, because I was going through similar emotions myself (and still do).

If there truly is a heaven, that family definitely has a special place on the best cloud there is.

It sure ain't like Monopoly, honey.

I can't believe I'm actually writing this. Hell, I can't believe it's actually happened. But it has.

Caitlin was arrested today.

I was out shopping, getting groceries and birthday gifts because it's Chloe's 6th birthday today. I was originally planning on going yesterday, but I ended up in agony due to a UTI. I woke up feeling much better (I seem to have cured it with 2L of cranberry juice), so I left as soon as I was ready.

Blake had already called me, upset that she had left the house to 'get some bread,' and hadn't been back in over half an hour. He asked me to try calling her phone, as he didn't have the new number (we had to change it last month after her original phone and SIM card were stolen). I tried calling it, but she'd left it in the house.

I was in Tesco, getting the very last of the things I would need, when my mobile rang. I answered it, thinking it was Blake, but it wasn't. A PC Hopper was on the other end, telling me that my 11-year old daughter had been arrested for shoplifting. I needed to come to the police station so that she could be questioned.

What really infuriated me? She got caught shoplifting just last week (Tuesday? I think...). She was in a shop with me and instead of opening her mouth and asking me if she could have something, she just stole it. I'm in that shop nearly every day, so one of the employees just came up to me and told me what she'd done. Because I was right there, and she gave the items back, they let it go. But I really thought that getting caught right there in front of me would have been enough to make her not want to do it again. I thought.

But no... not only did she do it that day, but apparently she'd done it three more times since then. Once yesterday, when I asked her to go and get me some more cranberry juice (I could barely walk from the pain, it was so bad). And twice today. Every single time was caught on CCTV.

What did she steal? Chocolate muffins, cookies, a bottle of pop and... get this... a pack of bacon. Yes, bacon. (WTF??? I don't get it, either.) They might total up to £5. Might. And it's not like we don't give her money. I don't believe in pocket money - giving her money just for the sake of giving her money - but if there's something she wants, and I have the money to give her (and can afford it; there are weeks when money is really tight and I have to be extremely careful), she gets it. Blake's even worse. He always gives her twice what she asks for. If she wants £1, she gets £2. (But then again, she always has been Daddy's Girl.) If she had opened her mouth instead of just thinking about what she was going to cram into it, she could have had the money to buy the stuff. But now - at eleven years old - she has a criminal record, she's banned for life from that particular shop, and she has completely destroyed any trust her father and I had for her.

I'm disgusted. I'm livid. I'm gobsmacked. And aside from actually killing the kid, I don't know what the hell to do. Blake has said she's grounded 'until death.' I don't know that it's going to make a difference. Hell, she was grounded before. The only reason she was asked to go to the store was because I wasn't feeling well (yesterday) and because I was out of the house (today). Blake should have just left her in charge and went to the store himself. We wouldn't have had so much fucking trouble.

And of course, I feel guilty for asking her to go to the store yesterday. I feel like I should have just crawled there on my own, and ignored the looks I'm sure my howling in agony would have gotten.

Anybody want to take an 11-year-old thief off my hands?