MPSIIFund News

This past year we have raised enough money, for the first time ever, to issue a $100,000 MPS II research grant. The application deadline is February 29, 2012 and the funding decision will be announced March 30. We are thrilled and excited. SO excited. I can’t wait to read the applications. Click here for more information and to download the Request for Applications (RFA). THANK YOU to ALL OF YOU who made this happen. What an amazing feeling it is.
Love Deb

Above is a picture of Avery reading to Trey and holding his hand while I was flushing and de-accessing Trey after his infusion today. Avery is growing up to be a thoughtful, caring and kind little brother.
Trey’s IT dosing schedule has been left as originally planned. Our next trip to UNC is December 11-20. Trey missed his November dose so that his body and back can heal. Trey will get his next dose on December 13 via lumbar puncture. Although unfortunate that Trey missed a dose, it is what it is. Trey is in the trial, he got his first dose, our waiting is done. As I mentioned in my last post, getting used to life in a trial has been an adjustment. There have been a lot of major changes in our lives in the past three monthes. I don’t think I will ever again feel the intense anxiety and fear I did before Trey qualified for this trial. Then the excitement and busy’ness’ of the gala, followed by a three week family trip to UNC for port placement and first dose in a phase I experimental trial, then a trip home, and days later, emergency removal of an infected port. All on top of regular life stuff.
In the past two days I’ve finally had a chance to sit down and read to my kids and just hang out. It’s been soooo nice.
It’s also been really neat noticing changes in Trey. At first I was a little disappointed I didn’t notice more in Trey sooner. However, I have realized that although the changes aren’t striking, there have been small but significant changes. It also occurred to me that if Trey’s cognitive skills didn’t begin to decline as early or quickly as other boys with MPS II, maybe changes wouldn’t be as quick or noticeable either. Who knows… that’s the beauty of a trial! Here’s what I have noticed: Trey is better able to play with his siblings. I didn’t notice it until recently, but I haven’t had to intervene in squabbles nearly as often. Previously, Sadie and Avery could play for hours alone together, without disruption. As much as Trey wanted to be involved, he struggled. He didn’t have the patience or language to ask for something, wait to for a response, and if Avery or Sadie said no, to work it out without grabbing or hitting. If Trey was with his siblings, you knew because someone would end up frustrated or crying. However, this past week, I’ve noticed all three kids playing together for lengths of time with ease. I even noticed Trey and Avery off playing together, wanting to play alone, without Sadie. As bad as I felt for Sadie, this has NEVER happened before. Avery used to ask Trey to do or play something and Trey wasn’t able to hold focus for long enough to do the game Avery wanted to. Ave would inadvertently end up going to Sadie, who could participate.
Trey has also lost no skills through all that’s gone on. In the past, any breaks in speech or occupational therapy services would lead to small set backs. He would always regain the skills, but there was a step back. Not this time. In addition, all his providers have commented on an increase in focus, attention, and perseverance. And last but not least, I’ve noticed subtle changes in language, mostly in Trey’s attempts to pronounce more syllabyls in words (ie. ‘banana’ instead of ‘nana’).

This is Trey moments after he lost his front tooth. 🙂
Two weeks ago tomorrow, Trey had emergency surgery to remove his infected intrathecal port. Yesterday the neurosurgeon who removed the device, Dr. Cochrane, took the stitches out. Trey was a rockstar. For about 15 minutes, Trey lay on his side saying ‘ouch’ and wincing every time the doctor pulled on a stitch. But Trey lay still while he did it. I was SO impressed. We were doing deep breathing and after a couple minutes, it made me think about labour. And yoga. 🙂
Trey also had 3 other appointments yesterday. One was a neuro exam at BC Children’s hospital (it was finally set up, yahoo!), as part of the IT trial.
He also saw the osteopath we’ve been seeing since his diagnosis. Her name is Carolyne Abrams and she is unbelievable. Carolyne will pick up on things I’ve not noticed, haven’t told her about, or things that have not yet happened. For example, she will ask if Trey’s had a recent ear infection in a specific ear, when he did, before I say anything. She’s noticed when Trey was about to get a cold or flu. She’s also had a lot to say about the fluids surrounding his brain. When Trey was younger, she commented that his fluids were ‘sluggish’. She needed to see him every 6-8 weeks to get them moving well. However, there were times when his fluids were flowing well, so she wouldn’t need to see him as often. As he got older, she noticed that his fluids moved better and she could get away with seeing him 2-3 times a year, which is what we’ve been doing for a few years now. However, yesterday was different. We went in and Carolyne said Trey’s brain and the fluids surrounding his brain felt completely changed. I told her about the trial and she said she could feel and visualize the enzyme in there. She said though, that the enzyme didn’t feel completely absorbed by all the tissue of the brain. Her work was to facilitate the absorption. I know not all of you are believers, but because she has picked up on so many things in the past and helped Trey in so many ways, I am. It was like she was reading Trey’s brain! It was so cool.
Trey also had a sleep study last night, during which he slept 20 minutes. Good times.
But the biggest news is that Trey’s IT dosing at UNC next week has been cancelled. The neurosurgeon yesterday commented that Trey’s lumbar area was not healed enough from his recent surgery. Because of the infection (which is why the intrathecal device was taken out), he would not risk putting ANYTHING into Trey’s central nervous system (CNS), for fear that the infection is not completely gone and putting a needle (which is how they were going to dose Trey this month-via lumbar puncture) into his CNS could put the infection into his brain and kill him. I relayed that info to UNC (Dr. Muenzer). However, I learned that lumbar punctures or spinal taps are possible in three different areas of the back, so I inquired why they couldn’t use one of the other two sites to dose Trey. In a nutshell, there are two other ways to get into the spine, but they are risky (ie. if they put a needle in higher up, they risk hitting the spinal cord, and paralyzing Trey). If it was an emergency, they’d do it, but with the situation Trey is in, it is not worth the risk. Dr. Muenzer spoke with Dr. Cochrane today, and they agreed. It is not worth the risk for Trey or the trial. So, Trey will miss his dose this month. Chances are we will go back to UNC as planned in December, but there is a small chance we’ll go back in a couple weeks when Trey is healed. I’ll post when I know.
In the mean time, we’re well. It’s overwhelming, adjusting to life in a trial, or at least our life in a trial. I thought we’d have a break for 2 1/2 weeks back home before going to NC again. Instead, Trey had emergency surgery, spent time in the hospital on heavy antibiotics to prevent meningitis and death, and now, when I thought life might find a rhythym, our trip has been cancelled and I’m thrown back into the unknown again. When people ask us if we can make a birthday party next week or hockey game on December 12 or plan speech therapy or occupational therapy or nerve conduction tests, I have now learned to say: ‘I don’t know.’ Right now, we’re one day to the next and I’m learning to work with that. I was a ‘planner’ in my previous life. But we’re adjusting. And we’re good. The small picture is a bit of a gong show, but the big picture is awesome.
Love and hugs to you all,
Deb

I will begin by saying: the below blog is NOT mine. My friend Melissa wrote it, but it echoes my thoughts and sentiments and it is so well written, I wanted to share it. Now, I will say I’ve not given up on my hopes and dreams that Trey may get married or hold a job or travel. I still have those hopes and dreams. But the whole ‘normal’ thing? I completely agree.
Melissa, I am so SO fortunate to know you. I have HOPE. Not only that our boys are going to live a long time, but that more and more people will let go of normal. Not only for our boys, but for all of us. So we can finally relax and be ourselves! Enjoy:
“We’ve had a lot of questions surrounding Case’s current abilities since entering the clinical trial. People hear that he’s doing really well and wonder, “How well? Is he normal?” We’ve had questions both from MPS parents and friends outside the MPS world that circled around the question of whether Case is now, close to, or will ever be “normal.”
Let me set the record straight. I am not normal.
Case is not normal. Are you normal?
But the rub is, I don’t think the miracle necessarily involves making Case “normal.” What I hope it involves is giving us a longer life with Case, but with the lessons we’ve learned (and continue to learn) from MPS intact.
If you talk to any MPS parent, they will tell you about the amazing lessons they’ve learned and people they’ve met from having MPS in their life. I wouldn’t change that and I’d venture to say most other parents wouldn’t either.
So when your child has a disease where the literature estimates the average lifespan to be between 12-15 years old, you let go of normal a long time ago.
Letting go of the dream of our children going to college, letting go of them ever getting married, having children of their own, that was the easy part.
Letting go of them living, now that is the hard part.
So to be clear, when I say that Case is doing “absolutely fantastic”, what does that mean?

• First, I have hope that he will live longer than 12.
• Second, I have hope that he still will be running at 12.
• Third, I have hope that he will still be talking to me and understanding me at 12.
• Fourth, I have hope that he be eating, breathing, and laughing on his own at 12.
• Fifth, I have hope that my older boys will not have to bury their younger brother … ever.

Do I have a guarantee of those? Of course not.
But neither do we have a guarantee that we will wake up on this earth tomorrow.
But I feel like there is no longer a clock running. A clock running much faster than yours or mine, ticking in my ear all the time.
The clock is now drowned out by the laughter of a playing child.”
By Melissa Hogan

Last night, Trey had emergency surgery to remove his new intrathecal port that was infected. Due to overwhelming support and love and requests for updates, here is the low down (it’s long because you all want updates in different areas and I needed to cover my bases J).
Three weeks ago, on October 7, Trey had an intrathecal port-a-cath placed as part of the MPS II Intrathecal Clinical trial at the University of North Carolina. One and a half weeks ago, on Tuesday, October 18, Trey received his first dose of intrathecal Elaprase through the port.
Thinking back, the incision sites never looked great. Even when the stitches were removed under general anesthetic during his first dosing, looking at pictures we took of the sites before he went back for the procedure, I can see the beginnings of what happened. To place the device, the neurosurgeon made one incision in Trey’s low back and one just under the right ribs in his abdomen. Through the incision on his back, the surgeon placed a catheter in the subarachnoid space in his spine. He then tunneled the catheter from his spine to his abdomen, where the port was placed. After surgery we were instructed to keep a binder on Trey, a wrap of sorts that goes around his abdomen, with the hopes of keeping pressure on the area so that while he was healing, no cerebrospinal fluid would leak out of the hole in his dura, pool, and cause an infection (and removal of the device). We were to keep this on for 2-3 weeks until we received a Benik wrap that would also wrap around his abdomen, but with a different purpose: to protect his new port from breaking. Many of these ports have broken, so the wrap was meant to minimize the chances of breakage.
While in North Carolina we were followed by a team of doctors and nurses who kept reassuring us everything was fine. 11 days post-op, when the stitches came out, Trey’s skin had already overgrown the stitches so you could barely see them and the site was red (Trey’s had numerous surgeries and his body had never done that before). The redness never really went away and looking back, his incisions never really looked great. We were seen in NC before we left, this past Monday, October 24 and were told everything was fine. We flew home Tuesday.
When I looked at the incision sites Wednesday, I was concerned. It was two and a half weeks post op and things weren’t healing as fast as they should. The port area was worst, as it seemed a bit ‘open’, but both areas were red. Doctors Wednesday prescribed an antibiotic cream for the sites and suggested leaving the site covered with cream, gauze and the binder during the day, but to leave the sites uncovered, to get air to the incision areas, over night. That should do it.
However, Thursday morning I was convinced I saw stitches in the sites, so we were back off to the hospital. They were in fact stitches, but they were deep stitches, not meant to be seen. The wound was opening up. Then, the plan was changed. The incisions sites were worse, so we stopped using the one cream, started another, and kept everything covered. I was nauseous just looking at the sites. We had an appointment to come back Friday afternoon to have things checked.
Friday morning, his port incision was basically wide open and I thought I could see the actual port. I paged Trey’s doctor and we headed back to the ER. By about 1:30/2pm on Friday, neurosurgery confirmed that what we were looking at was in fact the port, and that the device would need to come out now. It was infected.
Both the neurosurgeon here and I talked with Dr. Muenzer (and we sent Dr. Muenzer photos of the incision sites) and everyone agreed. We did not have time to travel back to North Carolina to have Trey seen. The device needed to be taken out as soon as possible.
Why did this happen? I’m still not sure. I’m not sure anyone is. Why was it an emergency? Long story as short as possible, the whole reason for this trial was to get Elaprase, the enzyme Trey is missing, into his brain. The weekly enzyme replacement therapy infusion he gets cannot cross the blood brain barrier because the protein in the Elaprase is too big. So, they crossed the blood brain barrier by putting a port-a-cath through the blood brain barrier (across the dura) into his central nervous system/brain. The reason the blood brain barrier is so protective and doesn’t let much cross it is because if the usual bacterial and viral infections we get like colds and flus get into the central nervous system, it’s SERIOUS. Like meningisits and death serious.
So, when Trey had his intrathecal port-a-cath placed, they were essentially making a clear path to get into the central nervous system (CNS)/brain. When the incision site at the port started opening up, there was now a path from the outside world (bacteria & virus’) into Trey’s CNS. Fever and an elevated white cell would indicate a systemic infection, which Trey fortunately never had, but the fact that this path from the outside to his CNS was wide open and infected, was not safe. If we didn’t get the device out now, the increased white count and fever was sure to come, and because we didn’t know when, we didn’t have time to fly back to UNC. And, because the local area was infected, they could not just re-suture up the site, because then the bacteria and infection would be sealed into his body, with a path still to his CNS.
So, Friday afternoon Trey was put on heavy duty antibiotics to prevent meningitis while we waited for the OR. Trey finally went back for surgery (after not eating all day, poor guy) at 9:30pm and was out by 11.
This morning he’s doing well. I’m just glad the device is out. I was so so scared and am just grateful this is behind us. Today we’re waiting to see cardiology and infectious disease to find out how long Trey needs to be on IV antibiotics before we can go home.
Then we figure out the next step. No one can go near his CNS until the infection is healed. So, we’ll be in touch with Dr. Muenzer and UNC as he heals. It sounds possible and it is my hope that as soon as Trey is healed, he can get his next dose (which should be on November 15) via lumbar puncture (like an epidural, just deeper: they just put a needle into the subarachnoid space, push in the dose and take the needle out). First priority is safety. Second is getting enzyme into his brain. Third, is discussing placement of a new device.
Because this device has had issues, I want to discuss risk versus benefit. Trey could get another port placed, get his monthly IT doses of enzyme wide awake, thus skipping all the risks associated with general anesthetic and sedatives. However, the device has broken or led to emergency removal more than once. Given what just happened, I’m also not sure I’m comfortable being this far away from the doctors who placed the device and know what’s going on with Trey, MPS II and the trial. For the past few days, it’s been a panic of who do I talk to, what do I ask, do we fly to NC or stay here, who’s overseeing Trey’s care, who’s making decisions, and getting all the doctors involved (UNC trial doctor who oversees Trey’s care in NC, UNC neurosurgeon, BC Children’s neurosurgeons whom we’ve never met before and who know NOTHING about the device or trial, and BC Children’s Biochemical Disease team who oversees Trey’s care here), to talk; to each other and to me.
On the other hand, Trey could get monthly lumbar punctures (LP’s) to deliver the drug, which would then have no port risks, but this would involve monthly sedatives and possible scarring of the spinal nerve roots. I have questions to ask, conversations to have.
But for now, Trey is well. And your support has helped me survive. My mom and grandma, Omi (who’s 86), took shifts yesterday looking after Avery and Sadie. Mom slept over. Omi took Sadie and Avery to dance class this morning. My cousin Krista and brother-in-law Clete are having a party for our nephew’s birthday. My mom is dropping Avery and Sadie off at the party. Someone at the party will drop them off at our other friend Madeleine’s house. Madeleine will watch the kids as long as we need. Tovah is making us dinner. Nadine stopped by last night to drop off gourmet snacks while we waited. Other people have stopped by the house to offer their time. Others yet have offered to shop for Halloween and Avery and Sadie’s birthday’s which are tomorrow and next Saturday.
At this point, we’re barely keeping our heads above water, so not only does your support mean so much emotionally to us, but we have really needed your help.
Thank you everyone, for keeping Trey and our family in your thoughts and prayers.
Love Deb

Trey’s first dose as part of the MPS II Intrathecal trial was successful. We were the second case of the day and Trey was brought back at 8:45am. Dr. Muenzer came back to the waiting room with Ryan after Trey being put to sleep and commented that Trey was so cooperative, Trey even put the face mask on himself! That was really nice to hear for two reasons. Trey will receive general anesthetic once a month for the next 3-6 monthes to receive his dose after which time they will try sedatives. Trey is very good with me accessing him for his IV Elaprase home infusions, so I am hoping that we might even be able to skip sedatives and let him be fully awake for his IT doses after that time (the trial is actually only 6 monthes long, after which time Trey will roll over to the extension study). The second reason is, since Trey is having to go to sleep monthly, it will be relieving for all if it doesn’t cause a lot of anxiety and fear in him.
The next awesome news is that the port worked! Dr. Muenzer was able to draw back fluid to send to the lab and Shire. Although you’d assume the port would work, the port used in this trial, the only intrathecal port available to date, has been problematic (it is the reason the trial was put on hold). When Trey was in surgery for his port placement, another boy who is in the IT trial was having difficulty with his port (it had been placed only a month or so earlier), and his mom posted that the port may be broken. With so many port issues in the trial, knowing that Trey’s port is working is a huge relief!
But of course, the big big news, the reason we are here, is that Trey now has enzyme floating around in his brain. I can’t describe what this feels like as a mom. When Trey was almost two, I was told he would stop growing, his hands would curl, his facial features would ‘coarsen’ (another word I dislike, but one that doctors use to describe our boys) his joints would stiffen, his heart valves would thicken, his airways would fail, it was likely his development would plateau and decline. The prognosis was awful. Trey was going to die. Young.
But, when Trey was three, he began IV Elarpase, enzyme that would help and hopefully save his body. The results of IV Elarpase have been amazing. Trey is tall, his joints have good range, his heart and airways are doing well, and he looks like any other kid around him. However, it hasn’t helped his brain, the major part missing in the equation. Today that changed. Today marks a day of hope, a day of possibility. Trey is getting the enzyme he is missing, ALL OVER HIS BODY.
I can’t wait to see what that looks like. What Trey with enzyme in his brain and central nervous system looks like. Dr. Muenzer has said that stabilization is the goal. Improvements would be icing on the cake. But I am still excited.
Thank you all for your support and emails and messages and calls. I can say it again and again, but when your child is going through something like this and I’m sitting here waiting-to get into the trial, for port surgery, for dosing, having you behind us, makes the difference.
I first heard about the possibility of this trial during Trey’s diagnosis five and a half years ago. Today it’s a reality. What a journey.

Ryan is with Trey right now, getting his fine and gross motor skills assessed. I am sitting in the waiting room. It is our third appointment of the day. First, Trey had 1.5 hours of cognitive testing, followed by an hour long audiology test. 20 minute break for lunch, now more tests and at 3pm Trey will have bloodwork, vitals, a neuro and vision exam while Ryan and I have the opportunity to speak with Dr. Muenzer and ask more questions we have about this trial.
The port surgery was somewhat stressful, but as I have mentioned to many, this trip is NOTHING compared to the intense anxiety and fear of previous trips. As much as people tell me this is not a vacation, it’s more than a vacation. It’s better than a vacation. It’s a trip during which our son will begin to be saved from the progressive disease he is today, WAS tomorrow, dying from.
It’s not a cure and Trey may never be ‘normal’ (I dislike that word intensely, not only for Trey, but for all of us who need and try ‘fit’ the mould), but he won’t be getting worse. After your child is diagnosed with a progressive disease, NOTHING is better than that.
In the two weeks since we arrived at UNC, Trey’s had major port surgery, probably more than 20 appointments, and all three of our kids have had the flu. However, we’ve also gone to The Museum of Life and Science, snuggled, eaten dinner together, gone swimming, played pool, read, gone putting, shopped for UNC paraphernalia, watched lots of TV (a treat for us), and snuggled some more. It’s been pretty great.
A Facebook message from my friend Melissa (pictured above) started getting me even more excited about tomorrow. Tomorrow Trey will get his first dose of enzyme into the brain. For those of you who are lost, Trey has one port-a-cath through which he gets weekly IV Elaprase which puts the enzyme he is missing into his body (I do those infusions at home). However, the protein in Elaprase is too big to cross the blood brain barrier and thus cannot help the brain. Doctors found a solution for that problem by putting the enzyme directly into the brain. Last Friday, as part of the MPS II IT trial at UNC, Trey had a second port-a-cath placed, through which he will receive monthly IT Elaprase infusions at UNC hospital.
This is what Melissa said: “The rest of your life starts tomorrow. Like diagnosis, tomorrow starts a new before and after.” She has a way with words. Because she knows. Her son Case was diagnosed with severe MPS II Hunter Syndrome (meaning the brain is affected). He is also in the trial. Last week I got to meet with Melissa. She is so excited by all the changes she sees in Case. From attention and learning, which the drug is meant to help with (but as it is experimental, not guaranteed), but also physical changes from range of motion and gait to head shape, heart, hearing, and more.
This morning I read a story from The New York Times about a mom whose son has Tay-Sachs (http://nyti.ms/pl7Ch3), a progressive disease in which death is guaranteed by age three. It made me think about my last post where I blogged that I don’t know how parents without hope go on. I figured it out. It’s called love. You go on because of love. This mother comments on Amy Chua’s “Battle Hymn of the Tiger Mother,” the latest handbook for parents hoping to guide their children along a path to success and wealth. She will never be a tiger mom. Instead, she says: “We are dragon parents: fierce and loyal and loving as hell… NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground.”
Although our paths are different, I am a dragon mom too. Her story feels like mine. Most people don’t want to hear what I have to say. It’s too deep, too real. The people I am close with today aren’t scared to get dirty and talk about more than what colour to paint our house and what flowers to plant in our garden. And as much as that has drawn a line in the sand with many people I used to know and with new people I meet, I like being a dragon mom. I don’t want to be 80 years old and have regrets, to wish I lived. Because of Trey, there is no chance of me doing that now. I am a dragon mom. And I am so grateful to my family (I’d call them my friends, but when you’re a dragon mom, your friends become your family) for joining my dragon journey. I love you.
I have so many big emotions going on, not overwhelming emotions, just big ones. Excited ones. Grateful ones. Life can be so many things, especially with a child who has a progressive disease. But you know what? I am so glad for it. I am glad to be Trey’s mom and to be living the life I am leading. There is nothing better.

What an emotional roller coaster we’ve been on. I find it hard to blog because I don’t even know what to blog about. I could blog about having the time to hug my kids and help them work through their tantrums and fights and go to The Museum of Life and Science without a laptop on my lap now that this gala is done. Or seeing Avery happy for the first time in as long as I can remember because I actually have time to hold and listen to him. Or I could blog about how floored and touched I am by the results of our gala. How much money we raised, how much new support we gained (one new follower is making a travel blanket for Trey and other sci-fi fans who live in NC have offered to stop and pick up groceries or toys for Trey and our family). How overwhelming it was to organize a gala to raise money for research into my child’s progressive disease, in addition to the fact that major celebrities were in attendance and I got to dress in a gown and get my hair and make up done, when usually, like right now, I’m in sweats or jeans.
Or I could blog about the fact that I’m sitting in a hospital waiting room, waiting to go back and see Trey after having had major surgery to place an intrathecal catheter, when the surgeon was just here to let us know that everything went well (when during consent they go over the fact that death and brain damage, although a small possibility, IS a possibility, and when they discuss the surgery: cutting your child in two places, putting tubing inside Trey’s spine and then connecting the tubing to the other incision location where the port is located, after tunneling through his abdomen, which apparently is incredibly painful and will require some heavy pain meds and recovery time). Or I could blog about the fact that this is only the first step in many for the trial Trey has recently qualified for. In a week and a half, Trey will have his first intrathecal dose of Elaprase, an experimental drug, with the hopes of saving his brain and allowing him to live a full and complete life.
Or I could blog about how much hope I have for this trial. Or how grateful I am to be here at UNC, as a part of this IT trial, as overwhelming as it is. If we’d had different results from Trey’s LP in August, it would have been a different story. I have friends who’ve been excluded from the trial because their kids’ LP results were too high or they had shunts or their IQ’s were out of criteria range and I don’t know how they’ve done it. Gone on. I know you have to. I felt like I wanted to die when Trey was diagnosed, but here I am, so I know life goes on and it’s up to each of us to figure out how to go on when life seems unbearable, but I’m not sure how they’ve done it. Then I have other friends whose kids’ brains are okay. And they feel bad talking to me about their kid getting diagnosed with hearing loss and fitted for hearing aids because our situation is… objectively, but not subjectively, harder or worse. So we’re somewhere in the middle.
I know people have been waiting for updates ‘from UNC.’ So here it is. We’re overwhelmed, scared, exhausted, awesome, grateful and excited. But mostly, we’re hopeful.  Although today, the small picture is surgery and the fear associated with that, the big picture, this trip and trial, represents hope that Trey is going to live. A long long time.
I’m about to go back and see Trey. He will spend the night at the hospital tonight and go back to the hotel some time tomorrow. We’re going to spend the next days mellowing out, taking care of Trey and allowing him to heal before his first intrathecal dose on Tuesday, October 18. Before that, however, Trey will have his IV Elaprase infusion this Tuesday at the hospital and have a surgery check up one week today.
We love you and are grateful (beyond words) for your support.
Love Deb

Well, we have dates. I’m still blown away by the fact that Trey qualified for the IT trial. We knew about the possibility of this trial upon Trey’s diagnosis and since we realized Trey’s brain is affected last summer, have been doing everything we can to get him into it. Getting into this trial has been on our shoulders and minds for a long long time. It is still surreal. And really puts everything else into perspective. Trey will have his port placed on October 7 and he will have his first infusion on October 18. Then he will have monthly IT infusions, hopefully forever, or until a cure comes along (this being a trial, nothing is assured, but the drug is doing such wonderful things for our boys, it’s looking good). There it is. It’s not real yet, but it’s getting closer. What a wonderful world!
Trey is about to join the group of boys in this photo! All of them have Hunter’s and in addition to getting their weekly IV enzyme replacement therapy or ERT, they are all enrolled in the IT trial (from L-R: Case, Easton & Elijah) putting monthly enzyme into their central nervous systems.

Click the link to read the story!
http://www.nsnews.com/Drug+trial+gives+hope+North+Vancouver+family/5352293/story.html