MPSIIFund News

Details of Hope, Sweat & Breathe:
Doors open at 12pm
12:30-1:15pm Vinyasa Yoga with Mike Nichols
1:30-2:15pm Vinyasa Yoga with Chris Duggan
2:30-3:15 Restorative Yoga with Lindsay Collins
3:30-4:15pm Family Yoga with Melissa Donohoe (grandparents welcome!)
**** 4:15 pm Raffle for a Diamond Necklace!
There is yoga for EVERYONE, including: newbies and long-times practitioners, the young, the old and the in between, the injured, the healthy and the healing. You can come for one or all of the classes and if you don’t have kids of your own for family yoga, you can bring nieces and nephews, neighbours or friends!
Peter Jack Rainbird will be playing live music during the event AND don’t forget your yoga mat or be among the first 100 people to donate $100 to get a Lululemon mat!
4:30pm Singing of Happy Birthday to Trey with cupcakes for everyone and special guests coming to sing!
Organizing a fundraiser for research for a cure for the rare and progressive disease that affects your son has a lot of attachments. There is so MUCH. So much hope that we will find a cure in Trey’s lifetime. So much overwhelming gratitude for the people who come on board to support our cause because what that cause means to me is the life and survival of my son. When people support our cause, it feels like my heart is pulled out of my chest and into their bodies. It’s really hard to describe, but it’s like each person who supports our cause becomes a part of me, a part of my family, a part of my heart.
On the flipside, I used to get really disappointed and angry and resentful when people didn’t donate or attend our event or volunteer or donate an auction item or do SOMETHING. I have let that go though. Over the years I have realized that some don’t understand the significance of an event like this for me, and that’s okay. Or they don’t know us well enough for them to prioritize an event like this in their lives. And that’s okay too.
I’ve been doing fundraisers for research into MPS II or Hunter Syndrome for seven years. When I began fundraising, I put everything I had into the events: all my waking time and energy, every bit of my heart, and more. I think it felt like if I didn’t do everything I humanly could, I wasn’t doing enough. I wasn’t working hard enough to save Trey. Put bluntly, that approach didn’t work. It was so overwhelming and exhausting and emotional, I could have been diagnosed as bipolar. I was high, I was low, you couldn’t bank on which I was at any given moment, and I didn’t stop.
Hope, Sweat and Breathe is my first event in two and a half years. There are many reasons why I took such a long hiatus, but one was to regroup: as a mom, as a person, as an event organizer. This is my first event with a new perspective. I want to organize an awesome event, but not at the expense of my family and my sanity. I want to organize an event that I can breathe and love who I am throughout the event. When I decided to jump back into fundraising after a hiatus, it was with the clarity that I would not lose my mind over it. What a better way than to combine yoga into a fundraiser. It’s like a constant reminder of what’s important.
Hope, Sweat and Breathe is also my first event to combine two of the forces that move me most in life. MPS and yoga. If you get right down to it, MPS is raw. It’s real. It forces you to look death in the eyes. Upon diagnosis, without tools to support me, MPS was eating me alive. I didn’t know how to live (and sometimes I still struggle) until I found yoga. Yoga is about breathing and letting go. Really letting go (like sometimes sobbing through class). It is also about finding strength and playfulness. Although it is not forced, if you get right down to yoga, like MPS, it is also raw and real. Yoga is about facing your demons. Demons like MPS. Putting yoga and MPS together in an event for me just fits.
It turns out that this fundraiser is taking place on Trey’s 10^th birthday. Double digits is a big deal to any parent, but to Ryan and I, on a birthday Ryan and I were told Trey might not make it to, this event is a big deal.
The event is an even bigger deal because the people who are teaching at this event- my teachers- I have a piece of them in my heart, so it means a lot that they will be there. It’s also really awesome because these teachers of mine are such amazing people, that they are surrounded by other amazing people who are coming on board to support Hope, Sweat and Breathe. I am looking so forward to being in a room with such inspiring and gifted people.
This event is full of all the reasons I practice yoga and full of the effects of how MPS has transformed me. It is real and full of heart. There is no bullshit, no pretending, no forgery. Just real human beings working with our imperfections to be the fullest, most whole people we can be on this earth, supporting each other and growing ourselves and each other with every chance we get. I can’t wait. It’s going to be breathtaking.

When I watched this, I just kept thinking: ‘This is a life. This is a life that could be saved.’ No matter how different the MPS parent’s life is from others, we all began with the same hopes and dreams. We revel in the joy of watching our children splash in water, crash on the drums, share precious moments with their siblings… What Jamie and Jason are facing right now is every parent’s worst nightmare. It is unimaginable. Only for Jason and Jamie, it is not. Shire has the power to grant Jack life. We are still wishing for a Christmas miracle. If it does not happen, we will suit back up for battle.
[youtube]https://www.youtube.com/watch?v=Z9Ja9jbAjTc[/youtube]
And if you haven’t already, please sign the petition and pass it along!!
Sign Petition

Shire denied Jack life-saving treatment. They first said no last Thursday, at which point The Isaac Foundation implored them to reconsider. They said no again this past Monday. You can help. If you are interested in joining our fight to save Jack’s life, send me a message. It will not take much of your time, but it will make a difference.
You can also sign a petition for Jack, by clicking here.
The Isaac Foundation has been posting updates of its conversations with Shire. You can read about them on The Isaac Foundation website.
My family and the people around me are excited and busy with the soon arriving holidays. While I participate in the festivities, in my heart sits the hope that Shire will step up to their credo and ‘be as brave as the people they help.’ You can read Shire’s Responsibility statement here. If Jack wasn’t dying, it would be funny. They want to be ‘brave enough to do things differently’, to keep ‘the patient at the heart of everything’ they do, and where my jaw dropped, they state that they ‘constantly ask ourselves, “what’s the right thing to do?”’ Shire, I’m confused. Are you seriously telling us that the right thing to do is let Jack die?
Right now, Shire’s responsibility statement couldn’t be farther from the truth. Although I understand where Shire’s hesitation in granting Jack IT drug comes from, they have failed to dig deeper, to think outside the box and ‘do things differently,’ to find a solution for both Jack and Shire to win. You know they’d be finding a way to get Jack drug if he were their child. The answer is there, it was just easier to say no. Apparently Shire thought we would take no for an answer. You have underestimated us. Shire, start digging deep.
You know that song ‘All I want for Christmas is my two front teeth…’ I have had that song stuck in my head for weeks now, since this fight for Jack began. All I want for Christmas is IT for Jack. Shire, you have a chance to play Santa here. Christmas is one week away. I promise you, there is not a better gift anyone could give. You have a chance to be a hero. Do it!!

Jamie Fowler is one of my closest friends in the world. I feel her in my heart and my soul. I love her. Her partner is Jason and they have two kids, Juliet and Jack. Jack is six years old and has MPS II (a rare and progressive disease) like Trey.
I don’t want to hurt Jamie and Jason in saying what I’m about to say. It’s the elephant in the room. They know it, we know it, everyone knows it, but no one wants to say it. Jack is dying. Jamie’s acknowledged this before, but it hurts so much to even say the words, that most of the time these words are silent. We can’t keep them silent any longer. Not if we are going to save Jack’s life.
Although Trey and Jack both have MPS II, Trey, unlike Jack, isn’t dying. Trey qualified for a clinical trial that puts the enzyme our boys are missing into his brain. Trey has been on this drug for over two years now and is not only no longer dying, he is learning and he is happy. Over three years ago, Jack was excluded from this trial due to hydrocephalus.
For over three years Jamie and Jason have been watching Jack lose his skills. If your child is not dying in front of your eyes, you might not have a clue how excruciating it is, but Jamie’s blog and a new blog written by Andrew McFadyen (which includes a letter Jamie wrote to a mutual friend Melissa and I), will give you a feel.
One of my biggest struggles over the past two and a half years has been how to live as a mom to a child who, as Jamie put it, ‘has a chance at life,’ when Jamie goes to sleep wondering if she’ll hear Jack say mama or smile at her again tomorrow. It makes me sick.
There is an experimental drug out there that has been proven safe (Phase I/II is complete). Although it has not been proven effective yet (we are waiting for Phase II/III to begin), anyone who is involved with the Phase I/II trial and knows and sees our kids, knows it works. Although not all our kids are gaining skills at the same rate, NONE of them are dying. ALL of their progression has been stopped, AT MINIMUM, where it was at when they began receiving the drug.
Looking in from an office at the FDA or the company who makes the drug, Shire HGT, even the doctors in charge of the trial, I understand their hesitation in giving Jack drug. The doctors and drug company (as do I) want to prove the drug is effective so it will be approved by the FDA. Jack may not provide compelling evidence to approve the drug. The FDA doesn’t want to harm anyone.
What the FDA doesn’t realize, is that by not giving drug, they are killing kids.
Jamie and Jason have been fighting since the trial began to get Jack enzyme into his brain. Even when Jack was excluded, they didn’t give up. They have fought criteria, doctors and drug companies every step of the way. Now, however, with Jack about to lose everything, they have enlisted help. The Isaac Foundation has taken over advocacy for Jack to receive compassionate drug.
What it comes down to for me is: There is a kid whose life we could save. Yes, it will involve work, but there is a kid’s life we could save.
So as not to effect approval, Jack’s data could be excluded from the trial data. There is a trial site set up where Jack could receive drug. Jamie and Jason know there is a possibility Jack could die receiving this drug (Jack will certainly die without the drug) and have no problem signing a consent. Funding is not an issue.
There is a kid’s life we could save. Isn’t the rest just details to be worked out?
Jamie and Jason approached The Isaac Foundation because The Isaac Foundation has a track record. They have fought and won every battle they have waged in order to access expensive drugs for kids with rare diseases. These wars have been waged against governments and drug companies.
Jack, we are not giving up. We are currently waiting to hear back from Shire as to whether or not they will grant Jack access to IT Idursulfase. Hopefully they will say yes. If they say no, we are ready and armed. Jack’s life is not something we are willing to lose.
We may need your help. If we do, I will post again. Thank you for checking in. As we have learned, one voice becomes one hundred, becomes one thousand and eventually, the powers that be have no choice but to listen.

‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’
If everyone walked the earth living by this quote, there would be no need for this blog. We all are fighting our own battles. The subject of this blog has come up numerous times among my fellow MPS parents, as well as other parents of children who have significant differences (some people may refer to these children as having special needs, but I think we all have special needs, so that word doesn’t fit for me. I don’t yet have a word that does). It has come up so many times, that I feel compelled to blog about it.
I know parents of typical kids go through some version of this experience because I go through it with Avery and Sadie as well. When Avery begged to have flavoured mini-yogurts at his birthday party because we eat raw sour yogurt at home, I cringed waiting to see the response when he hollered excitedly to his friends (who I’m guessing were expecting ice cream instead of yogurt at a birthday party) ‘Who wants yogurt?’ with a HUGE grin on his face. Or when Sadie cut her hair to the scalp because she doesn’t like wisps of hair on her face, we discussed that people might ask what happened! Or especially when my son Avery wore dresses, we both prepared ourselves for what to say when people made comments or gave us looks because it happened every time we left the house (Avery wearing dresses was the closest I have come as a typical parent to experience what it is like as a parent to a child with significant differences)… I get it. We all want our kids to be liked and for others to think our kids are as wonderful as we think they are.
The difference is, I have not met or spoken with a parent of a child with significant differences who does not have or has not worked through a high level of anxiety just leaving the safety of their home with their child. Last week, Ryan was almost in tears taking Trey to a Whitecaps soccer game with his soccer team because he was so anxious about what people might say to Trey or Ryan, how they might look at Trey, or what might happen.
Our anxiety is not without reason. Our children have been called monsters, we have been banned from public buildings because of the loud sounds our children make, we have received ‘complaints’ when our children speak with their hands because they cannot talk, to name a very few. The most common though- it happens if not every, almost every time we go out- are the looks. The ‘what is wrong with you/him’ looks when our children cannot walk or walk differently, cannot talk or talk more like what is typical for a four-year old, laugh over-excitedly for a child their age, and do anything not typically age appropriate.  After the looks comes exclusion in many different forms.
All of that hurts. Deeply. Our children want nothing different than everyone else’s children. They want to be included, they want to be liked and they want to be loved. As parents to children with differences, we also want the same for our children as every other parent wants for theirs. We want them to be happy, we want them to be liked and we want them to be loved.
I know that our kids are harder to understand than a typical child because they are different. At an MPS conference a while ago I asked a mom who described her nine-year old child to be cognitively six months old, what that looks like. I don’t know. But I want to know because I care, and because of my experience with Trey, I know this mother and this child have the same wants and desires we all do. I can also tell you from experience that I have not met a person of any level of cognitive ability, who does not respond to human connection. It matters if you try.
My point in saying all of this is so that the next time you encounter someone who looks different, is doing something unexpected or even something you consider rude, before drawing the line between ‘us’ and ‘them’, consider their humanity. Consider the possibility that they are doing their best. And remember that all anyone wants is to be happy and to be loved. We are all in this journey called life together. There is no ‘them.’ There is only ‘us.’
‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’

The Canadian MPS Society Board of Directors has supported our decision to fund a $110,000 research grant over two years to Dr. Douglas McCarty from Nationwide Children’s Hospital in Columbus, Ohio. Dr. McCarty is researching MPS II gene therapy and is our hope for a cure. This grant has successfully exhausted our MPS II funds from The Canadian MPS Society and from now on we will be fundraising for and granting research funds from our MPS II Research Fund within The Isaac Foundation. If anyone has questions regarding this, please ask! Below is the short summary of Dr. McCarty’s project:
The objective of this project is to develop gene therapy for the combined treatment of both the neurologic and somatic pathology of MPS II by systemic gene delivery. This approach takes advantage of the vast expanse of vasculature serving critical organs and tissues, particularly the brain, and the recently recognized ability of some serotypes of adeno-associated virus (AAV) to cross the blood-brain-barrier. Due to the relatively small size of the human IDS gene, we will utilize self-complementary AAV constructs, which essentially contain both strands of the DNA double helix rather than a single strand as in conventional AAV vectors. Packaged in an AAV serotype 9 capsid, these vectors can restore deficient genes in somatic tissues including liver, skeletal muscle, and heart, and have the ability to cross the blood-brain barrier for CNS delivery.  Part of this objective will include the comparison of two different transcriptional promoters to control expression of the IDS gene: the ubiquitously active mouse U1a promoter, which has been effective for CNS expression and improvement of cognitive function in the MPS IIIA mouse model; and a miniaturized promoter derived from cytomegalovirus, with potentially higher activity in muscle and heart tissues. Similar AAV9 vector constructs are under development for a wide variety of somatic and CNS diseases, with a strong record of safety and efficacy in pre-clinical models which will provide further support for the direct translation of this project into a workable gene therapy treatment.
In other news, Trey received his second local dose of intrathecal enzyme at BC Children’s Hospital as part of the MPS II IT trial based out of UNC last Thursday, September 19. It’s Trey’s 25th IT dose total.
We spent September 20 in Emergency at BC Children’s Hospital because Trey could not weight bear on his right leg after two weeks of limping off and on and we had an emergency MRI this past Monday, September 23. Yesterday we saw ENT, Rheumatology, PT and OT for range of motion measurements at BCCH (routine), and then followed up with the orthopedic surgeon to get results from the MRI. The doctor could not see anything indicating why Trey suddenly could not walk, but tonight I found out the report shows a meniscal tear. I am waiting to find out what that means and what’s next.
Above: Trey flying off the dock at my mom’s cabin into the water. Trey lives hard and full and as a result, sometimes crashes and burns!

There is NO question that intrathecal drug is working wonders for Trey. He is learning, he is happy, and he is living. In my previous blog post, I noted that criteria for the upcoming Phase III intrathecal trial needs to be narrow in order to get this drug approved, which is the ultimate goal. To get the drug approved. I can see that the argument for broadening the criteria to save a few of my friends’ kids lives is not in the best interest of the greater good. Okay. However, there is another option, one that doesn’t risk approval, and one that saves ALL our kids lives. Compassionate access. With other drugs, compassionate access has been granted once the drug has been proven safe in the Phase I/II trial and the Phase III trial has begun. Well, Phase III is about to begin.
If you were told your child is dying, what risk would you take to save his or her life? When Trey qualified for the trial, Dr. Muenzer made me repeat back to him that there is a possibility Trey could die as a result of the trial. He asked me if I was willing to take that risk. I know he had to ask, but for real? Trey has a severe form of MPS II. Without treatment, he would be dead by 20. Without a doubt. With IT drug, there was a ‘chance’ of him dying. Definitive death or possible death? EASY choice.
When I answered Dr. Muenzer’s question two years ago now, we didn’t know what the drug would do for Trey, but we still took that chance, the chance for life. There are now all sorts of data growing about IT efficacy. Due to the broad criteria in our phase of the trial, not all boys have had the same results because they began IT drug at varying stages of disease, but I can tell you I’ve not heard one report of progression. All of the boys have either maintained the level of skill they had when they began drug, some have continued to learn and gain skills although not at the same rate to maintain IQ, and some have even maintained IQ or IQ has increased since beginning IT drug.
I have heard that compassionate access might not be granted for Phase III of the Intrathecal Elaprase trial. I need to ask why not? When this drug is safe, when my son is living and learning and other boys are waiting and declining, why would compassionate access not be granted? If everything goes smoothly, we’re looking at drug approval in three to five years. With an average lifespan of twelve to fifteen years, our boys don’t have time to wait until approval. This is not a group of impatient parents. This is a group of desperate parents whose sons will die waiting for drug approval. They need compassionate access NOW (in reality, most of them needed the drug years ago). What risks would you take to save your child’s life?
Pictured here are boys with MPS II who did not qualify for Phase I/II and may or will not qualify for Phase III of the trial. These boys have moms and dads, brothers and sisters, grandmas and grandpas. Look at these boys and imagine their moms and dads reading about Trey’s progress and gains while they watch their child lose their language, lose the ability to hold cutlery, lose the cognitive function to play and to want, while they watch their children lose the light in their eyes. It is killing them. All these families want is a chance to access a drug that is available to other boys and will save their son’s lives. Compassionate access is not in the realm of the impossible. It is a decision that rests in the hands of a group of people who get to play God to these boys. If this was your son, what would you do?
Please speak up. We need to hear your voice!

As defined by Doctionary.com, a pot of gold is ‘the realization of all one’s hope and dreams.’ At this point in time, with the only option for saving the brain in MPS II, intrathecal Elaprase is the MPS II parent’s pot of gold. It represents life for our boys.
We are at a critical point in time for families and boys with MPS II Hunter Syndrome. The Phase III trial is approaching (although delayed due to the FDA requiring more information on the new port- we’re now at least a few months away from a start date). The criteria is narrow. I PRAY that the start date arrives soon enough for families hoping to get their boys into the trial, but as this date approaches, I feel sick.
I waited five years with crippling anticipation and anxiety for Trey to qualify for the trial, testing his IQ every six months hoping it would stay within the range to qualify. I didn’t do this alone. I did it with my group of MPS II moms, all of who were hoping and praying for the same. Fortunately for our family, Trey’s IQ held up long enough for him to qualify. Unfortunately for my friends at the time, NONE of their kids got in. NOT ONE. There are only 8 boys with MPS II in the current Phase I/II IT trial in North America. Seven more in the UK. The rest of the boys, many of whose parents I am very close with, are dying.
Criteria needs to remain narrow in order to prove efficacy, so the FDA will approve the drug. If Shire cannot prove efficacy, the FDA will not approve the drug. But, this leaves two questions. One, how will Shire prove efficacy? I will address this question now. Two, what about all the boys who didn’t or won’t qualify? I will address this in my next blog post.
How does Shire prove efficacy to the FDA? In the untreated cognitively affected form MPS II Hunter Syndrome, boys lose all their skills until they enter a vegetative state and pass away. What would qualify as effective treatment for this disease and how can that be measured? Would preventing progression (preventing death) qualify as effective? In this case, IQ would continue to drop because the child is not gaining 12-months of skills in 12-months, which is the only way to maintain IQ. How would you measure maintenance of skills or prevention of loss when a dropping IQ appears to be loss? What about maintaining but not normalizing IQ (a ‘normal’ IQ is 80-120)? Or ‘normalizing’ IQ?
Where does Trey fit? Trey’s IQ is stable, which is amazing to me, since before IT drug Trey was losing IQ points faster than a kid whooshing down a waterslide. I just got results today from Trey’s IQ tests this past Monday and his CGA (Cognitive General Ability) is unchanged from a year ago. It gives me shivers. Trey is gaining 12-months of skills in 12-months. I didn’t expect it. The fact that I can see Trey learning and enjoying life is enough for me, but knowing that we’re up against drug approval, Trey’s test results are great news.
Ask anyone who knew Trey before the trial and who knows him now, and they would unanimously respond with how effective this IT drug has been for Trey.
Trey is learning to swim. He is 90% there. I have spoken with men who have an attenuated (not cognitively affected) form of Hunter Syndrome who have told me they cannot swim. Not because they don’t have the cognitive ability, but because the physical effects of Hunter Syndrome on their bodies prevents them from being able to swim. This drug is changing Trey’s body so much (not to mention what it takes cognitively to learn to swim), that he will learn to swim.
Trey can count, add and subtract. Until IT drug was seeping into the cells in his brain, although Trey had memorized the numbers from 1-10, he could not count 5 apples if you put them on the table in front of him. He had no concept of one-to-one correspondence. Now he is doing simple math and he also knows all his letters and letter sounds and is learning to read.
Trey hugs. Trey wouldn’t hug me before IT began. He wouldn’t hug anyone. He would lean in because he knew what we were asking and maybe he even wanted the hug too, but almost as soon as he would lean in, he would push back away. I wonder if it was a result of his vestibular system being out of whack? This observation has been made by other trial moms as well. Our boys didn’t hug before and now they’ll lean in for these long snuggly holds. Not only is it AMAZING to be able to hug and hold your child who you thought was going to die before you, but it made me wonder what other subtle and less observed or less obvious changes are going on inside Trey.
Trey is no longer dangerous. When Avery (Trey’s younger brother by 20 months) was four, he asked me if he could take kickboxing so he could defend himself against Trey. Losing the ability to speak, Trey was getting increasingly frustrated by our lack of ability to understand him, so he communicated in the only way he could. He would hit, kick, bite, push, throw. To a kid half Trey’s size, Avery was terrified to live in our house. Until Trey began receiving IT drug, we could not leave Trey’s younger siblings in a room alone with him because Trey was a danger to them. Now they do puzzles and play games like Bingo, tag, and Monopoly Jr together.
This is only the tip of the iceberg. I could write at least one thesis on all the improvements- not just stabilizations- Trey has made since beginning the IT drug. You might ask me how I know these improvements in Trey’s behavior, body and cognition are a result of this drug? Because this is a progressive disease. Because between August of 2010 and October 2011 (when Trey started receiving IT drug), Trey lost 25 IQ points. 25. In 14 months.
If Trey had not received IT, I don’t know exactly where he would be at this point in time, but he would have continued to lose the skills he’d gained such as riding his bike, the ability to eat or speak, until he died. When Trey was first diagnosed and I read what the progression of disease is like in the severe form of MPS II, I read things like: seizures, feeding tubes, adaptive strollers, adaptive bath and shower seats, safe rooms, vegetative state, early death. Trey would have lost EVERYTHING.
But instead, Trey began IT. No, Trey is not completely typical, but I’m not sure he’s not becoming more and more so every day. It’s getting harder and harder to pick Trey out of a crowd. His world is NOTHING compared to what it would have been had he not received IT drug. He gets to play community soccer and baseball, two of the most important things in the world to him. He can go out in our front yard and ride bikes and play street hockey in the cul-de-sac BY HIMSELF because he can pay attention to cars and safety and he has the social and athletic skills to do so.
Instead of a funeral, I am now contemplating the possibility of Trey holding a job or getting a girlfriend (he’s looking for a redhead ladies ;-)). I would argue that the ability to halt a progressive disease is a miracle. What do you think?
If you have comments on Trey’s before and after IT drug observations, or if you would like to weigh in with your thoughts, please comment!!
Pictured above: After our incredible night out with the City of NV Fire Fighters, we dropped off some ‘Got Hope’ shirts to the hall. Derek, far left, got everyone dressed up and sent me this picture. Do you think they’ve Got Hope? Thank you Derek and the CNVFD, your community support means more than you know.

Do you remember the woman who tracked us down for Mr. Brad- red Jeep- McRae? Well, after the AMAZING red Jeep day, this wonderful woman- Lisa Stirling- asked us if Trey would like to ride in a fire truck. ARE YOU KIDDING ME? Well, that ride was last Thursday. Talk about a wicked couple of weeks.
We’ve been to that fire hall before. Each year our homeschooling group organizes a tour of that same fire hall, the last time we went was pre-IT trial. Thursday’s tour led to a heck of a lot of déjà vu because with every step Trey took around the hall, I recalled what his experience was like before IT drug. I revel at where we are now.
Before IT drug, Trey was distracted, didn’t understand a lot of what was said, and couldn’t attempt a lot of what was offered due to his sensory sensitivities. During Thursday’s tour, Trey listened, he stayed still and paid attention, he asked questions, and he played games- the fire fighters have a foosball table. While Trey was playing foosball, which to any of the firefighters watching may not have been a big deal, but to me, I was almost in tears watching a kid who had the attention to stay and play the game as long as the firefighters let him, understood the concept of the game so he was able to play with an 11-year old girl, and had quick enough responses to defend his goal from shots. I couldn’t tell who was better at the game, Trey or the 11-year old! NONE of this would have been possible pre-IT: not comprehension of the game, not the attention, nor the response time.
One of the biggest changes I noticed in Trey though, were the lack of sensory sensitivities I noted above. Being in a huge fire hall, with a lot of people around, a lot of sounds and action and big stuff, is a lot for a kid whose proprioceptive and vestibular systems are ‘off.’ Previously, trips to the fire hall were too much for Trey, I could tell by watching him. Although he wanted to be there and wanted to try things and socially had the confidence to do so, if an opportunity was offered to him before, like shooting water out of a fire hose, sitting in the fire truck, trying on fire jackets or boots, he may have moved towards participating in something like that, but the moment he got there, he would back away. It was just too much. He NEVER would have gone in the driver’s seat or rode home solo in a fire truck. (You’re going to have to crane your neck to the left to watch, the video is sideways, working on straightening it out, in the meantime just remember to stretch your neck to the right when you’re done! :-))

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Solely because of the IT drug, Trey was able to completely enjoy the entire experience. He had a BLAST. Apparently he was beaming from ear to ear for the whole ride home, waving and telling everyone ‘I’m in a firetruck!’ At the end of the night, after the truck drove away, he stood on the side of the road for a couple minutes in his fire jacket with sunglasses on (at 8:30 at night), telling everyone who passed by that he drove in a firetruck. It took about an hour for us all to come off that high.
Our trip to the fire hall was no less awesome for me. I was pretty quiet for a lot of the trip because I stood in awe, watching my changed son. Before and after. I have a ‘before and after’ diagnosis lens and now I have a ‘before and after’ IT drug trial lens. It really is surreal watching the child- your child- who you were told would be dead by 10-20 years of age (Trey turns 10 next year) grow and learn and do the opposite of what you expected to happen.
Thank you City of North Vancouver Fire Hall and fire fighters for a truly unforgettable night.
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If you watch the above video carefully, you’ll notice Trey’s ability to listen and follow directions. I was and continue to be baffled- watching this video- by how easily Trey now understands and processes information. It’s seemingly simple, but in my world nothing short of a miracle.
Note: Blogging has become bitter-sweet as a result of this IT trial. I am caught between the push and pull of posting to inspire and give hope to families whose boys might qualify for the next Phase of the trial and receive this drug, to give anecdotal evidence to the greater medical and approval communities regarding what we notice in Trey as a result of this drug, and to my dear friends whose sons have not qualified for the trial and who I know read these posts with a deep sense of unjustness and indescribable sadness. I still hold hope that with all the treatments and research up and coming, all our boys will get the treatment they so desperately need.

I got a Bachelor’s Degree education in trashies today. Trashies are a kids toy, of which there are many, that you can trade, have different levels of value/worth, and are all the rage in our neighborhood right now. Avery thinks they are awesome and anything he thinks is awesome, we hear all about!
We were driving in the van and Avery was telling me all about the different types of trashies, two of which are ‘common’ and ‘limited edition’. ‘What does common mean?’ Avery asked. Common means there’s lots of them, I told him, and when there’s lots of them, they lose their value and importance in our culture because you can get them anywhere and everyone has them!
Then Sadie asks: ‘What does limited edition mean?’ I responded that ‘limited edition’ means there’s not very many of them and because there’s not very many and they’re hard to get, everyone wants them, and they’re considered pretty cool. We then talked about other cars and consumer items in the world that have ‘limited edition’ status. It got me to thinking.
Trey’s not my kid with a progressive and rare disease, he’s my limited edition. He’s hard to come by and everyone should want one of him. He’s also pretty cool. Although I avoid labels when possible, when the need arises, this one is my new go-to. It has superhero status.
It’s all about perspective…