MPSIIFund News

This morning Trey, Avery, Sadie, my mom and I drew winners for our ‘Time for a Cure’ participants (www.timeforacure.ca).
Read below to find out who won what:
Trip to Frog’s Hollow in Tofino: Carolyn Morgan-Chan
Neclace and bracelet from Mexico (value $150): Gill Thody
Mobile hair and makeup for two from The Pretty Parlour (www.theprettyparlour.com): Krista Purcell
Two Whitecaps tickets: Tovah Paglaro
Queensdale Market GC: Michelle Cehak
Kidsbooks GC: Sarah Park
Ethical Kitchen GC: Madeleine Funk
Family Gourmet GC: Jack Cehak
Cindy & Co. GC: Charis Kalesnikoff
Esso GC: Jeff Conatser
The Keg GC: Heather Cehak
BC Liquor Store GC: Duncan & Melissa McDonald
Save On Foods GC: Ayasha Valji
Chapters Bookstore GC: Jer, Mimi, Cara and Dylan Myttenar
Future Shop GC: Linnae Bee
Thank you so much to everyone who participated in ‘Time for a Cure’ and to everyone who donated (btw, it is not too late to donate. We will not do final tallies for the fundraiser until the end of May, so you can still donate and help us raise as much money for ‘Time for a Cure’ as possible!!). We hope that over the years as people catch onto the idea, this fundraiser will grow and become huge. It was really really nice to have a bit of a break this year from all the work that a huge fundraiser takes. We have been rejuvenated and are ready for another awesome ‘Tacos for Trey’ next year, on the first Saturday in May 2010 (as we get more details you can read them on our ‘Events and Donations’ page). Thank you all again for your support. We hope you have an excellent summer and rest of 2009 and we hope to see you on our website for our next ‘Time for a Cure fundraiser on the first Saturday in May 2011!
As soon as we have tallies for monies raised for ‘Time for a Cure’, I will post it here!

Today is International MPS Awareness Day. What does that mean and what can you do? Talk about MPS with anyone who will listen!! The first step in this battle with finding a cure for our kids is letting people know what MPS is. As you know, most people don’t. So, when you’re out and about today, think about speading awareness. It will help us get that little bit closer to finding a cure and every bit helps. Happy International MPS Awareness Day!!

An article I wrote about the situation with rare diseases in Canada is in the most recent edition of BC Parent Magazine. Click here to read the article.

THE NEXT SURVIVOR SERIES
Six married men will be dropped on an island with one car and
3 kids each for six weeks.
Each kid will play
two sports
and either take music
or dance classes.
There is no fast food.
Each man must
take care of his 3 kids;
keep his assigned house clean ,
correct all homework,
and complete science projects,
cook, do laundry,
and pay a list of ‘pretend’ bills
with not enough money.
In addition, each man
will have to budget in money
for groceries each week.
Each man
must remember the birthdays
of all their friends and relatives,
and send cards out
on time–no emailing .
Each man must also
take each child to a doctor’s appointment,
a dentist appointment
and a haircut appointment.
He must make
one unscheduled and inconvenient
visit per child
to the Urgent Care.
He must also
make cookies or cupcakes
for a social function.
Each man will be responsible for
decorating his own assigned house,
planting flowers outside
and keeping it presentable
at all times.
The men will only
have access to television
when the kids are asleep
and all chores are done.
The men must
shave their legs ,
wear makeup daily,
adorn himself with jewelry,
wear uncomfortable yet stylish shoes,
keep fingernails polished
and eyebrows groomed .
During one of the six weeks ,
the men will have to endure severe abdominal cramps, back aches,
and have extreme, unexplained mood swings but never once complain
or slow down from other duties.
They must attend
weekly school meetings,
church, and find time
at least once to spend the afternoon
at the park or a similar setting.
They will need to
read a book to the kids
each night and in the morning,
feed them, dress them ,
brush their teeth and
comb their hair by  7:00 am.
A test will be given at the end of the six weeks, and each father will be required to know all of the following information:
each child’s birthday,
height, weight,
shoe size, clothes size
and doctor’s name.
Also the child’s weight at birth,
length, time of birth,
and length of labor,
each child’s favorite color,
middle name,
favorite snack,
favorite song,
favorite drink,
favorite toy,
biggest fear and
what they want to be when they grow up.
The kids vote them off the island
based on performance.
The last man wins only if…
he still has enough energy
to be intimate with his spouse
at a moment’s notice.
If the last man does win,
he can play the game over and over
and over again for the next 18-25 years
eventually earning the right
To be called Mother!
After you get done laughing,
send this to as many females as you
think will get a kick out of it and
as many men as you think can
handle it.
Just don’t send it back to me…. I’m going to bed.

Andrew McFadyen of the Isaac Foundation (www.theisaacfoundation.com) stayed with us last night while he was in town taking part in the Liberal Convention. He’s running for government. What an awesome MP he’d be. He’s passionate and has a huge, huge heart. Who’s Andy? I’ve written about him in my blog and news before, but for those who don’t know, he’s dad to Isaac. Isaac is a little guy, only 6 weeks younger than Trey, from Ontario who has MPS VI. We first met Andy, his wife, Ellen, and their kids Gabriel and Isaac, two monthes after Trey’s official MPS II diagnosis, at a Canadian MPS Society conference. Earlier that week we had just seen their family on the cover of the Globe & Mail, fighting to receive funding for ERT for Isaac.
Meeting them was like coming home. I’ve only hung out with Andy three times now: at the MPS conference, at their home in Campbellford (a quick side trip during one of our trips to UNC), and this morning, but he feels like family. It’s amazing. Everything he says feels good and I am immediately comfortable around him. Ellen is the same. She stayed with us last year during the MPS Symposium. Our families have similar values and priorities which makes us even closer, but the diagnosis has made us family. Minus Sadie, our kids are the same ages and were diagnosed around the same time. There is a connection that I have with their family that is indescribable.
I told Andy about the blog I posted yesterday and he gave me a different perspective. Before ERT, we knew the paths our kids would take. With many diagnoses, we are given an end point. This is where the story ends. Not knowing… that is good. Most of us don’t know how long we will live or what our futures will hold. We don’t have a known end point. This is hopeful. Now that they have ERT, hope is back and Trey and Isaac are like Gabriel, Avery and Sadie. There is hope and we can actually visualize them getting married or having kids or whatever.
Hanging out with people who really understand this diagnosis is so so so good for me. It’s hard to describe, but it’s like I can finally, actually relax. Living with MPS is like living a life (at least a huge part of your life) that no one around you understands, and then once every few years you get to spend time with someone who actually gets it. Completely. I don’t have to describe what I’m feeling or hide what I’m feeling or explain myself. The things Andy said while he was here…. it’s like he can read my mind. He just knows exactly what it is I think and feel without me having to say a thing. When no one else around me besides Ry has a clue (although extremely well intentioned our family and friends are, and understandably clueless), there is something so familiar and comfortable and wonderful in being understood. No words necessary.
Thanks, Andy, for the visit. And thank you for you and your family. We love you!!
PS. Happy ‘Time for a Cure’ Day!!!!!!!!!!!!! I hope you all have a wonderful day. We’ll be posting something up to the ‘Cure’ website tonight or tomorrow.

I often wonder how much of an effect this diagnosis has had on me. Yesterday I was sitting on the floor in our house holding my tummy due to menstrual cramps when Sadie walked up to me, patted my shoulder, and said “mum” with concern. She didn’t know what was wrong, but she was concerned for me, so gave me a hug. I said to her: “Thanks Sadie. You’ll get to feel this one day.” Not a millisecond later, a feeling/thought entered my body. It was along the lines of: “hopefully, likely, probably.” A millisecond after I made a statement about Sadie existing in the future, the reminder of her mortality stepped in.
I do wonder how many parents have this thought the second after they make a statement regarding their child’s future. I was actually happy to have the thought because I realized that these thoughts don’t just happen to me with Trey, but all my kids. Warped, I know.
I have also pondered about all the people out there who have only one child. Not parents with a child who has a diagnosis, as they have already been forced to bring their child’s mortality into reality, but parents with only one child who have not received a diagnosis like MPS. How can any couple have only one child I think to myself? What happens if that child dies?
I don’t actually think there’s anything wrong with having only one child. What my thoughts about all of this make me realize is how much of an effect the MPS diagnosis has had on me, my thoughts, my beliefs.

I want to preface the following story with the one change I’d make if it were about my journey with Trey: I don’t see Trey as having a disability. I don’t even really see him as having a disease, even though that is how Hunter Syndrome is described. He’s got a difference. Otherwise, this story is right on and makes me cry every time I read it!! Enjoy:

The IT trial is moving ahead. I spoke with Dr. Muenzer yesterday, and he said the following information is now public info and okay to share. I wrote as quickly as I could, but I am not committing to 100% accuracy, so don’t quote me!! If you have any questions, please don’t hesitate to email me.
The trial will be accepting patients between 2-3 standard deviations below the mean ( the mean is an IQ of 100, 1 SD is 15 points), patients of IQ 55-70.
If a patient has a decline of 1-2 standard deviations, but still has IQ above 70, they can also be included.
Must be 3-8 years of age.
Dr. Escolar is no longer involved in the trial. Dr. Muenzer’s group is doing development assessments for the trial.
Infusions will be given monthly, over 6 monthes. Patient must stay at UNC for 1 week each month.
Testing for effectiveness: baseline development tests (among other tests), then 3 monthes after, and after that every 6 monthes.
Shire will be paying for child and one parent to travel to UNC for baselines, which will probably start happening in about 4-6 weeks.
The first patient will have 2 infusions before the next patient starts. 12 patients will be treated, 4 will be control. After 6 monthes, the control group can elect to start the IT enzyme. After 6 monthes of the trial, Shire will continue to pay for IT infusions of candidates.
There will be 3 different doses given: 10mg, 30mg, 100mg, starting with the lowest dose for safety.
Whew.
Spread the word!!
Take care,
Deb

We had an appointment today to pick up Trey’s new ear moulds (one blue and one green). Sara, his audiologist, also decided to do bone conduction tests to see how his inner ear is hearing. His last bone conduction test was in September 2007 and was consistent with his ABR done in July 2006. The bone conduction test gives us an idea of where his permanent hearing is at. So, it is down. He does have increased permanent loss. Whereas before Trey’s hearing was mild-moderate, now his hearing is mild-moderately severe. I’m not too troubled about it at this point…
The thing I’m troubled and feel incredibly guilty and angry about is his ear moulds. Until today, I didn’t think to ask what they are made of. We eat all organic foods, have no plastic in the house, avoid all toxic glues, bedding, toys etc., but his hearing aides are made of PVC. Argggggggggggg. Needless to say, we have ordered new ear moulds, to arrive next week, that are made from medical grade silicone. If you haven’t heard, below is a description of what PVC is, taken from the www.healthychild.org website:
“Phthalates are a class of chemicals used as softeners, or plasticizers, in polyvinyl chloride (PVC, vinyl) products, including children’s toys, decorating and building products, and blood bags, and solvents and other additives in a wide range of consumer products, including cosmetics, personal care products, wood finishes and insecticides.
DEHP and DINP are used in flexible plastic and vinyl toys, some teethers, food packaging and cling wraps, medical devices, backpacks, shower curtains, building materials such as pipes, vinyl flooring and wallpaper, and other products.
DBP and DEP are used in some adhesives, dyesinks, mosquito insect repellents, plastic plumbing pipes, and personal care products such as nail polish, skin moisturizers, and perfumes.
Note:  The carcinogenicity of DEP, DBP and DINP to humans is unknown at this time.
Health Effects
Immediate Health Effects
If SWALLOWED, phthalates is Slightly Toxic
If ABSORBED THROUGH SKIN, phthalates is Moderately Toxic
If INHALED (SNIFFED OR BREATHED IN), phthalates is Slightly Toxic
Longterm or Delayed Health Effects
This chemical is likely to cause cancer.  It is considered a Probable Carcinogen by the World Health Organization, the U.S. Environmental Protection Agency, or another agency.
Allergen
Suspected Endocrine Disruptor = May interfere with, mimic or block hormones
Development Toxicant = Can interfere with normal development of a fetus or child
Reproductive Toxicant = Can harm reproductive system”
Why any company would use PVC in their hearing aid moulds is beyond me!