MPSIIFund News

My dear friend Tovah, a dedicated supporter of our MPS II Fund and good friend, shared this letter with me today during hockey practice (not ours, our 7 YO’s ;-)). It speaks to “difference” that I wrote about in my last blog.
It is a letter by Special Olympics athlete John Franklin Stephens to political commentator Ann Coulter, in response to her using the R-word during the presidential debate on October 22. Here’s a quote that tells a bit of the story: “I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow.  I am not either of those things, but I do process information more slowly than the rest of you.”
And here’s another: “being compared to people like me should be considered a badge of honor. No one overcomes more than we do and still loves life so much.” All of it, but especially this last bit, reminds me of Trey…
The letter is worth a read. We are all worthy of love, consideration, understanding, compassion, humanity.
Here’s a link to the letter: http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

Ever since Trey was diagnosed, I’ve had issue with the word disease. I don’t like it. It makes MPS II scary. It makes MPS II contagious. It makes MPS II something you want to avoid. I don’t want my beautiful child to be someone you avoid. He is fabulous and I haven’t seen anyone else love life more than Trey. He has so much to teach us. He is happy, accepting, helpful, concerned, giving.
But there’s something else that also makes people avoid Trey. Difference. Trey is different, and I’m fine with that (I’m different in a different sort of way :-)). I just wish the rest of the world would be too. Trey has hearing aids. He doesn’t always understand what you’re asking him the first time. He has a lot of scars on his body from a lot of different surgeries. The biggest difference I notice between him and other kids, however, especially as he gets older, is that while other kids (and adults) notice difference and are wary or scared of it, Trey is completely open to and accepting of difference. He never grew out of his openness and acceptance of people. Little kids will see and ask what those colourful things in Trey’s ears are (hearing aids- they help Trey hear better just like your dad’s glasses help your dad see better!), and once they know and understand this difference, they’ll get busy playing with Trey. Little kids don’t care about difference. They may notice it, but it doesn’t concern them. Big kids (and adults) will stare and then avoid or exclude.
I’ve heard it said a few times in our MPS community, that it would be easier for our kids’ brains to be affected, so they don’t have to understand and go through all the pain that it is to live with MPS. From what I’ve heard, MPS can be very painful. I don’t live Trey’s life, so I don’t know his daily pain, but even with all the surgeries he’s had, that can’t be fun. But, that’s not what these adults with and parents of MPS II kids are talking about. The pain they’re talking about comes from being different and what being different means in our society.
I just read an article quickly shot to the top of my all time favourites, here is an excerpt: “You have one of two reactions when you see someone who’s different on the street. You either stare, or you look away. But what if we provided an opportunity to steady your gaze long enough to see beauty in those gorgeous eyes, not disease.”
If we as a culture, can learn to see the beauty in all of us, this world will be one rockin’ place to live. Let’s hold onto the openness and acceptance that we are born with. Or for those of us who’ve lost it, let’s bring it back. Let’s be more like Trey. Here’s a link to the article: http://www.huffingtonpost.com/2012/10/18/hunter-syndrome-hunter-in-focus-positive-exposure_n_1971717.html#slide=1651953

One year ago, our entire lives changed (again). August 19, 2011 will forever be etched in my mind as the most intense and anxious day of my life. Hands down. I’ll never forget the shaking, fear, and holding back of vomit and tears while I waited four hours in the waiting room at UNC hospital- my heart jumping every time the waiting room door opened- to find out Trey’s fate. It is the day Trey qualified for the IT trial. Today Trey received his 11th dose of intrathecal enzyme. This past year has been amazing. I have spent more time with MPS friends than ever before, in New Hampshire, Maine, Massachusetts, Illinois, and of course, North Carolina. It has also been the most relieving year of my life. I am reminded of this constantly. Just like before the trial when I was reminded of the progressive nature of Trey’s disease with every ‘accident’, aggressive act, or forgotten word, now, with every full sentence spoken, every typed word, every swimming skill gained, every hit or grab controlled, every successful trip to the toilet made, I am reminded of how very fortunate we are.
Last night while talking to Avery and Sadie on Skype, Trey got the big, quivering bottom lip and began to cry: ‘Why do I have to come here?’ he asked. ‘I want to go home.’ It was heartwrenching and so hard to hear, but this wasn’t the first protest I’d heard. The whole reason I got a Skype account for Avery and Sadie a few days ago is because the day before I left for this trip, Avery said, also through tears: ‘When you go away so much, it’s like I don’t have a mom.’ It has been an emotional year for all of us (extended family and friends included), in so many ways and experienced differently by each of us. But what makes it worth it, is that a year ago, not only would Trey not have had the language to ask this question, but he didn’t have the comprehension to grasp ‘why.’
It’s been an emotional anniversary as well because this past weekend I met for the first time a dear friend whose son was excluded from the IT trial and whose body is rejecting IV Elaprase. She is currently fighting tooth and nail for her son’s life, and one year ago, I was fighting just as hard for Trey. Last week I was at my mom’s cabin at Cultus Lake, driving to pick up our milk from the farm, and as clear as day, I remembered doing the same trip one year prior- only the trip was completely different. This year I felt human. I could breathe, I was relaxed, I was at peace. Last year I was waiting for life or death. I worked to enjoy the moments- kittens entering our lives, snuggles while reading stories, cheering as the kids jumped off the dock into the lake- but I was distracted, and had to work to clear my mind, to focus, to enjoy life. One of the ways I released everything I was holding onto, was by listening to Will Blunderfield’s album, Hallelujah, so I want to share it (and him) with you. Some excerpts from his CD are below (to hear his music-his voice is beautiful- go to: www.willblunderfield.com):
‘This, being human, is a guest house. Every morning, a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all, even if they are a crowd of sorrows who violently sweep your house empty of its furniture. Still, treat each guest honourably, he may be clearing you out for some new delight. The dark thought, the shame, the malice, meet them at the door laughing and invite them in. Be grateful for whatever comes because each has been sent as a guide from beyond.”
‘I just want to take the time to honour you, cause you breath life in me, you give me strength to pull through. Now I’m glad I found you, you opened up my eyes. To the strength I hold inside…”
‘I paddled so hard against the current, I did not know, that all I needed, was to let the oars go, and just flow.”
Above is a picture of Jamie, Melissa, Sarah and I (all MPS II moms) at Cafe Ba Ba Reeba in Chicago this past Saturday. In Melissa’s words: ‘It was absolutely such a wonderfully strange thing today to walk around Chicago shopping and eating with Jamie Lynn-Brooks Fowler, Deb Cehak Purcell, and Sarah Nietering Mitchell, as if we didn’t have a care in the world. All brought together by MPS, but so nice to just enjoy each other’s company, intertwining conversations about doctors, tests, surgeries, trials, and drugs, with laughter about purses, rings, sunglasses, chocolate, tapas, and sangrias. Life is good, ladies, even when it’s bad, sad, and crazy. Thank you for living it with me.’ Ditto, Melissa. And to Jamie, my heart is with you all the way. I’ll be back in 3 monthes to celebrate.

[youtube]http://www.youtube.com/watch?v=iPhisB8_-wM&feature=player_embedded[/youtube]
It was our first MPS conference in July 2006. Trey was diagnosed in February 2006. Enzyme Replacement Therapy (ERT) for MPS II, Elaprase, was about to be approved by the FDA (it was approved on July 24) and we were gearing up for our fight to get this drug for Trey in Canada. Just before we left for the conference, we saw an article on the cover of The Globe and Mail about a boy with MPS VI whose family was fighting for the Ontario government to fund the already FDA approved Enzyme Replacement Therapy for MPS VI, Naglazyme.
The conference began on a Friday. We checked into our hotel room and walked out to the playground at the hotel. I recognized the family from the The Globe and Mail immediately. It was Andy, Ellen, Isaac and Gabriel McFadyen. Within moments of introducing ourselves, Ellen told me that Isaac’s ERT had been approved by the Ontario government just hours ago. I didn’t know this family at all and had met them less than a minute earlier, but I was in tears. Trey and Isaac were weeks apart in age. They were diagnosed only monthes apart. We were about to start fighting for ERT, and Ellen and Andy’s monthes long fight for ERT had just ended. They also had a second son, Gabriel, who is only 3 days younger than Avery. These were just the factual similarities. Getting to know them was even better and they became family. It’s hard to describe, but it’s like we can feel each other to the core- they know exactly how and what I feel and vice versa. We are deeply connected. Today, Andy and Ellen launched Project One Million and we are joining them in their quest.
Please visit Andy and Ellen’s website (www.projectonemillion.ca). Watch their video. Share it on Facebook and Twitter. Each week they are targeting one celebrity to help them spread the word. This week, help us reach Ellen Degeneres (http://www.projectonemillion.ca/shareitforward/). Stay tuned for next week. We only need a million dollars. In Andy’s words, let’s spark a million conversations, a million shares and likes, so that we can raise a million dollars. It’s not out of reach!
 

Joey Howell followed us on our trip to UNC this month, to film Trey’s tenth intrathecal dose of Elaprase, for his documentary Boys with Bigger Hearts. Joey has a family history of MPS II and because of what that means (just ask him about his uncle or cousins), was moved to make a documentary about this progressive and rare disease. He is from Denver, Colorado, and found out about us through our Once Upon a Cure gala last September. He filmed our gala and we met him for the second time when he flew up to Vancouver last Wednesday, to film our trip to UNC. Because of the rarity of the disease, I don’t often have a chance to hear many perspectives on MPS, so it was both wonderful and heart-wrenching to hear his stories growing up close to two cousins with MPS II.
It has also been equally wonderful and exhausting, to participate in his film. Joey’s vision is to tell the stories of a few families who live with MPS II Hunter Syndrome, masks off. Yes, they are stories of hope, growth, unity, community, love and life. But they are also stories of devastation, crushed dreams, destroyed and struggling relationships, love and death. I am SO excited about the possibility of what this doc might do for research and a cure, and it is also cathartic, to think that maybe, just maybe, more people might be able to understand just a piece of what we live through, but re-living diagnosis is not remotely enjoyable. And neither is sharing thoughts, words, and actions you would have preferred to bury.
On the flip-side however, at the moment, we have a pretty good gig going on. Trey hasn’t had any recent surgeries. We haven’t received any bad news. Trey is on IV and IT Elaprase with no noticeable adverse effects. His LP’s and general anesthetics are going smoothly. We’ve adjusted to trial life and the trips are shorter. Trey is growing and learning. Watching your child going under general anesthetic isn’t easy, and finding childcare and booking flights and changing timezones every few weeks (while you try to find a way to convince your local hospital to infuse an experimental drug via lumbar puncture into your child) isn’t ideal, but compared to what we’ve been faced with, it’s peanuts.
Anyways, enough emotion for today. Tomorrow I get to go to an MPS conference in Boston where I will meet families for the first time whom I’ve been sharing my soul with for years. I absolutely can’t wait and I absolutely know I’ll collapse when I get home. Ryan, thank you for continuing to be on the receiving end of these. Thank you for sticking with me through the muck.
Dose #10 complete. Joey, thank you for being a part of this trip. I’ll never forget it.
You can follow Joey and his documentary, Boys with Bigger Hearts, on Twitter: @joeyhowell and @BiggerHearts and on his website: http://boyswithbiggerhearts.org/

Trey got his ninth dose of intrathecal Elaprase today. No one got sick, no flights were missed, there are no ports to be broken or leak, lumbar puncture and anesthesia went as well as can be. This trip went as planned. We have our routines: we shop at Whole Foods, swim in the hotel pool, stop by Southpoint Mall, go to clinic, and get into our groove.
But it’s not a groove like any other. My son has a progressive disease. He is supposed to be dying. Since his diagnosis, I have been dreading, anticipating, fearing or adjusting to the different pieces of news Trey’s various doctors present us with. Things have either progressed, or at best, things have remained the same. But what do you do when your son’s progressive disease is reversing itself? For 9 monthes now, I’ve not been sure what to make of it. I’m still not. Every four weeks we go on this trip and I contemplate what we’ve chosen- to say yes and no to- to participate in this trial. It seems crazy, what we’ve done and what we do (physically, emotionally, spiritually and logistically), to get this little shot of drug into Trey’s back. But each month, there’s something new to report. Whether it’s the letter typing and focus that I blogged about a couple weeks ago, or the spatial awareness and ability to get along with his siblings from a couple monthes ago, there is always something new and amazing.
Yesterday I told Dr. Muenzer about my most recent discoveries: at first I thought Trey’s tongue was less dense. Brushing his teeth has become easier. But in the past couple of days, I think his tongue and surrounding tissue is actually reduced in size. Numerous people have commented on Trey’s physical appearance- he is growing like a weed and his facial features are changing. Trey’s speech therapist commented last Thursday that Trey is making connections he never did before, which has led conversation to flow much easier and be much more natural. Dr. Muenzer’s nurse, Heather, was boggled when Trey used the word ‘tangled’ this morning while we were waiting for his dose (his pulse ox was ‘tangled’)- like Trey’s new ability to type a letter, most don’t ‘get’ how amazing Trey’s use of a word like ‘tangled’ is, but Heather, after being around kids with MPS II for decades, gets it. I have also recognized over the past little while, but have not been able to put it into words until the past couple of days, that Trey’s behavior changes have led me to use less physical intervention. Before, whether stopping Trey from grabbing or hitting or doing something he knows he’s not supposed to (like eating something after his teeth are brushed or jumping into a pool without an adult), I would have to physically stop him. There was no way he would stop solely with verbal commands, although I gave those plenty. Now, however, I may have to repeat myself, but I don’t have to restrain Trey. I can just tell him NO. It is a shockingly easy way to parent and SUCH a relief.
But then there’s the flipside and the reality of our situation. Right now, and every four weeks until we have a cure, Trey is asleep under the care of an anesthesiologist to infuse an artificial enzyme via lumbar puncture into his central nervous system, to keep him healthy and alive. And I sit here thinking about what they’re doing to him while he sleeps and the fact that he has no say about what happens to him. Yes, this drug is worth it, and I don’t doubt our participation for a moment, but my stomach, and my heart, is in my feet. My stomach (and heart) falls to my feet again, when I think about all the MPS II boys (and parents) out there who need what Trey is getting right now. UNC never fails to bring forth a tremendous, wide-range of emotions in me. I can’t wait to go back into Recovery and see my beautiful little guy, who goes through so so very much.

Trey did get his dose a week and a half ago. The boy is lucky. For the past three monthes, Trey got the bugs his sister, brother and dad passed to him. The fortunate part is, the only bug he caught before his dose was mild enough to hold off with supplements until his dose was complete. With the others, Trey came down with a fever or vomiting within 24 hours of his dose. This freaks me out about antibody development- antibodies with IV Elaprase (I have no idea about IT Elaprase, although the fact that we’re pumping something foreign into Trey’s brain doesn’t fail to cross my mind) can develop and cause serious allergic reactions and can significantly reduce the effectiveness of the drug- but there’s nothing I can do about it, so for my sanity, I let it go, at least during my time at home. In NC I am and allow myself to be a full on mother bear.
But that’s not what this blog is about. This blog is about my changing world as a mum to a little guy with MPS II, who is getting enzyme into his brain. Although I never ‘gave up’ on his learning before this IT trial began, Trey was losing his ability to learn. He may have been retaining what he had in terms of skills, but he was definitely losing patience, attention and concentration, so trying to help him learn anything was… frustrating. And even before this, like when he was three, four and five years old, before I knew his brain was affected, I couldn’t help him learn at all. Every mistake he made, every sound he missed would send me into a panic that Trey’s brain was affected and he would die by age 15, which led to intense fear, and not an ideal learning situation for Trey. So, from the time Trey was diagnosed at age two, until now, I have let others direct Trey’s learning (we homeschool, but we have home schooling support, so this means: aids, OT’s, speech path’s etc).
Now, however, things have changed. I am no longer terrified about the possibility of Trey’s brain being affected. I know it is. But I have recognized that IT Elaprase in Trey’s brain is allowing him to learn. I am, for the first ever, really excited about Trey’s learning. I’ve just noticed this in the past few weeks, but I have all sorts of tiger mom (Have you read Amy Chua’s ‘Battle Hymn of the Tiger Mother’? Or the resulting New York Times ‘Notes from a Dragon Mom’? http://nyti.ms/pl7Ch3) goals for Trey. I guess with Trey I’m part dragon mom, part tiger mom, and part mother bear. It’s SO cool. At least a couple times a week I want Trey to type a letter to someone, which he is all over like a dirty shirt- he gets distracted, yawns and stares into the trees, but I can tell him to look at the keyboard, focus and tell me what letter says ‘mmmmmm.’ He looks at the keyboard, focuses, types the letter ‘m’ and then he wants to do it all over again the next day! Trey typed a happy birthday card to a friend yesterday. He was beyond proud. Until I gave up on printing and discovered the computer!, Trey’s cards consisted of a few quickly drawn scribbles. Now he persists, works hard and can type a letter. He was beaming. I was so so happy for him.
Trey also recently acquired a community support worker to help him become more independent in the community. Trey has always wanted to be in the community, meeting and visiting with people, so even if Trey wasn’t in the trial, this community support worker would have been able to help Trey get out into the community more than my time alone would have allowed. Part of this job though, involves goals. My original goal? Trey enjoying himself and feeling good. Now? He’s working on becoming an independent dog walker and I am hoping that soon (Trey’s nervous right now), Trey’s community support worker can help Trey ride his bike to the library, mailbox, or baseball field.
Because I now know learning is possible, a whole new world has opened up. Every night at the dinner table we take turns acknowledging what we are grateful for that day (I bet you can guess many of my recent moments of gratefulness). Trey participates, but often with modifications. I’ll ask Trey what he liked the best about today because I’m not sure he knows what ‘grateful’ means, and often Trey will respond with an answer that doesn’t completely make sense (for example, he’ll respond with what he wants to do later that night or the next day or he’ll bring up a completely different topic or question). Last night I asked him what he was grateful for (not what he liked about) today. His response: ‘I am grateful that Kyle took me horseback riding today (small words, big words, correct tense and all).’ Amazing.
Oh to the highs and lows of life… the highs and lows.

Sometimes I feel normal. I pick weeds from our garden peacefully or sit and flip through recipe books with curiosity or chat with a parent at a birthday party about parenting, and the conversation feels genuine. Real. I’m fully present and interested, not just going through the motions.
But MPS never fails to remind me I’m not normal. It never fails to remind me of the fragility of life. For the past three monthes, someone in our immediate family has gotten sick the weekend before Trey’s monthly intrathecal (IT) dose (every fourth Tuesday). Two doses ago in early April, Sadie woke up Saturday morning with the flu and a fever of 103. For the next three days, Sadie was not allowed to leave her hotel room and I spent my time washing hands and sanitizing every wall, door handle and countertop Trey may possibly touch. Trey got his dose, but four hours later came down with a high fever. Last month, Avery got a cold the Saturday before Trey’s dose. Trey got the cold by Sunday/Monday, but I was able to keep it at bay enough (with supplements) until Tuesday, so that Trey got his IT enzyme.
This past Friday night, Ryan came home with the stomach flu. He was supposed to leave with Trey and my mom for UNC Sunday. I spent Friday and Saturday contemplating if I could find last minute childcare for Avery and Sadie so I could fly with Trey instead of Ryan, if my mom could go to UNC alone with Trey (I’m not sure if a parent needs to be there for consent and dose), if my mom and Trey could fly as scheduled and Ryan could fly down Monday, if we should spend our savings and send Ryan to a hotel until Trey left for UNC…
Instead, Ryan promised me that if he flew with Trey, he would not touch Trey or anything Trey would touch (suitcase, his hotel room etc). My mom would sleep in Trey’s room, brush his teeth, take him to the bathroom, grocery shop etc. I sat there (and sit here) wondering if that was good enough.
Until they left today, Ryan was not allowed to leave his bed other than to use the washroom, and the washroom was cordoned off so the kids could not enter it- they got to pee in a bucket and wash hands in the kitchen. When Ryan had to get out of bed Saturday to pack, I made him wear surgical gloves and I followed him around, bleaching everything he touched. At one point, I asked him to go wash his hands. He said: ‘I just did.’ Me: ‘Did you notice that you scratched your nose about a minute ago? Please can you wash your hands again?’ Ryan is not quite as OCD (or crazy) as me.
Over the past years, during the first monthes of Trey’s IV Elaprase infusions, then for IT trial qualifications, and now for IT doses, I have sanitized airplane trays, windows, head and armrests, rental car doors, handles and booster seats, hotel room counters, phones, remote controls, and more. We have skipped play dates and birthday parties… far more than I can count.
The thing is, first IV Elaprase was saving Trey’s life. Now this intrathecal drug is REALLY saving his life. IV keeps his body in check, IT keeps his brain in check. I cannot even describe what the IT enzyme has done for Trey, and for our family. Most of you won’t know what a big deal this is, but Trey, with my help, typed two letters to his cousins this week. They were short, only two sentences long, but a year ago, Trey wouldn’t have been able to do this. He was losing patience, concentration, language, letter recognition and never would have been able to complete this task. Every skill that Trey maintains and/or gains from now on, is because of this intrathecal drug. Without it, Trey would be losing- EVERYTHING. So when someone gets sick, which literally threatens the life of my child because if Trey is sick he can’t get his IT dose, I go into mother bear mode.
And this mother bear mode reminds me that life is fragile. And that even though I have never been calmer and more amazed by life than now, since Trey started receiving this intrathecal drug, no matter how fabulous the drug is and how much it does for Trey, I won’t ever be calm for long and my life will never be uneventful. I will always be fighting for Trey’s life.  It is those moments that make me ever so grateful for the MPS community who truly and completely understand, and for those of my friends and family, who although they don’t understand, are there for me completely, with full hearts, and who don’t walk away when things get tough. I love you!!
Now that Trey, Ryan and my mom are off, I have done everything I can. Now I wait for Tuesday. Maybe then I can begin gardening again with peace. At least until the next dose…

I’ve tried writing a number of different blogs to speak to the video that I share below. I was able to watch it and read people’s posts and blogs about it, but I cannot write about it myself. Reading and watching videos are one thing. I can read something or watch something, have some reactions, and put them neatly away again. Writing leads to contemplation. It leads to sitting with thoughts and emotions, for moments, hours or days, and then contemplating some more. Contemplating what the below video speaks to, I just can’t do without opening a box stuffed so full, it would burst open. And I’m not sure how quickly or easily I could stuff everything back in. You see, the IT trial has allowed me to put this box high on a shelf, since last August. The year between realizing Trey’s brain was affected in August 2010 and August 2011, when Trey qualified for the IT trial, was so … BIG (is the only word I can come up with), I’ve just needed a break from big. I’ve needed a break from so intense, you can’t sleep or think about anything else.
But I do want to share this video because I met this amazing and wonderful family in 2008 at the International Symposium in Vancouver and because I want to acknowledge all the families who don’t have the choice to not go there.
[vimeo]http://vimeo.com/12175325[/vimeo]
International MPS Awareness Day is May 15.

While organizing our unforgettable Once Upon a Cure Gala last September 24, 2011, we connected with The Cupcake Girls. While our partnership wasn’t part of the original plans, I cannot imagine our gala without their involvement. Through the process of filming ‘I’m Late, I’m Late!’, their upcoming episode, airing next Wednesday, May 2 on The W Network at 8pm ET/PT, our Once Upon a Cure organizers got to know Heather, Lori, all their crew, and we got to visit them in their stores and taste different types of cupcakes and icings. When we first began talking with The Cupcake Girls about participating in our gala, I had no idea of the amount of art and creativity that would go into not only their cupcakes, developed for our ‘Alice in Wonderland’ theme, but their episode as well. Lori, Heather, and everyone involved was fabulous with all of our team, and Trey as well. They were professional, thoughtful, compassionate and lots of fun (just picture your child in a cupcake store, able to taste test anything they want. Trey had a blast!).
This episode brings forth bittersweet feelings for me. Once Upon a Cure was an unforgettable event. I poured my heart and soul into that event. I put every ounce of everything I have, for Trey, into it. Hours and hours of sweat and tears, with the mother’s dream of finding a cure for her child’s progressive disease. And it was worth every effort. We had more celebrities attend and more media attention than any of our past events. Thanks to our spokeswoman, Amanda Tapping, and other celebrities who joined our cause, together they helped spread the word farther than I ever could have on my own. We also raised double that of any of our other events.
However, only weeks after the gala, Trey began his participation in a phase I clinical trial in North Carolina that puts the enzyme he is missing into his brain, once a month (since he was two years old, he has been getting the missing enzyme infused into his body once/week, but that treatment does not help the central nervous system). His participation involved a minimum of ten days/month at UNC for the first six monthes. There was no way I could have organized another event during this time. This coming month, May, begins a new extension phase of the trial which necessitates only 5 days/month in North Carolina. So, while I am indescribably thrilled with the effects of this drug on his brain (I’ve never had cancer, but it sounds comparable to being diagnosed with cancer and being given only a few monthes or years to live, only to find out some time later that the cancer is gone- it’s not exactly the same, but I was given only years with Trey, and now, that timeline has now been removed), I am also saddened to not be able to follow our first extraordinary Once Upon a Cure gala, with another.
In the next days and weeks I will be collaborating with some wonderful, motivated, and generous people regarding what’s next for the MPS II Fund and Once Upon a Cure. I’ll keep you posted!
In the mean time, I hope you can find some time to watch The Cupcake Girls’ ‘I’m Late! I’m Late!’ episode next Wednesday, May 2 at 8pm ET/PT, for a glimpse of what our Once Upon a Cure Gala was like. I’ll be watching it, with happiness and gratitude for all we accomplished. Thank you to everyone who was involved, and this week, especially to Lori, Heather and The Cupcake Girls!! To learn more about The Cupcake Girls, you can go to their website (http://www.wnetwork.com/cupcakegirls) or follow them on Twitter (@TheCupcakeGirls) and Facebook (http://www.facebook.com/thecupcakegirls).