Our good friend Marie Hallbert, who lives in Ekilstuna, Sweden, is someone who has devoted a great deal of time to working on behalf of people with FOP. Based on a posting of hers from FOP Online, she is set to begin doing a whole lot more.

The following is a copy of Marie’s recent message. Marie is not a native speaker of English, but she gets her point across very well…

Hej
(lecture and dental and other projects)
I know that some of know a little, and a some of you are curios and here is my story..of what I am going to spend my days with in 2009 and hopefully for a longer time…

For you who dont know me
“I am mother of Hugo 10y with FOP and his older brother Kazper 14y without FOP and live together with their father Pelle in Eskilstuna, Sweden, and I am the president and the founder of the Scandinavian FOP association, and also IFOPA IPC Ambassador for Sweden”

I have worked as a hairdresser since I was 15y … hm for 26,5y .. my grandfather started the salon in 1934, but for a long time now we have been 5 partners that ownes the salon together, 3mounth ago I decided to sell my part to one of the girls that just rent a chair … so from the 1 of january 2009 .. yesterday I am no longer working as a hairdresser. From now I will do all I can for FOP and the families.

The past 7y since Hugo got diagnosed with FOP, I have done all that I feel that I can do for him … and that also came to involve all the FOPers in Scandinavia… I am a person that have a passion of solve problems… ok! I cant cure FOP … but I can help Fred K with publicity and I can arrange our Scandinavian meetings/Symposium so everyone gets the chanse to meet with Fred … And I know I dont have to explain the importance of meeting with him and get the love and hope that make the life with FOP much easier and sometimes even like a gift.

And thanks to the FOP lecture I had here at Mun-H-Center in Sweden in October I got so many offers and sugestions, so I felt that … OK! I have to make a decision here… I cant bouth work as a hairdresser/owner and continue and develop my FOP work, nights and weekends ar not long enough.

..That lecture is not only about FOP its also about give people a feeling of how it can be to get a rare diagnose or a handicapp in the family, I want the people to leave the lecture with knowledge of FOP but also with a smile on there faces and a calm feeling that life is not always easy but still filled with choices and possibilitys and that we are able to affect it.

And in the future I have plans to translate that lecture to English so …. I can have fun all over the world

I think/hope that I will be able to use the lecture in many different places, and that is my way to marketing FOP and my self , So… I can get a lots of new contacts, that can help me do the more important FOP things

As some of you know I have worked with trying to help one of our FOP-patients who have dental problem and locked jaw and at the same time educate a dental team here in Sweden … I am half way there, we just need mone to to do it (at lest it will be done faster if I get the money)
.. THAT is one of the first things I will try to get money for… and I hope/will try to make it so we get a team, that will be able to help all the FOPers in Europe … thats my goal anyway.

..then I have a project that includes all rare condoitions not only FOP… that will make it easier to get connections between doctors/patients/organisations esy and fast… and wish me luck in that one becaus its a great idea and easy .. and in my head and if I have success with that it can be used all over the world…

And then I have a friend that are journalist and she would like to write a book about Hugo together with me….hm…

Thats a few of my plans… I have more, but this is the things I will start with. Ofcorse I will also continue with all the other small FOP-things that I always are doing

And today I got a phonecall from one of the news papers (someone in that newspaper are in my “FOP-mail-bombgroup”) they where interested in what I am going to do and wanted to do a large intervju and write about my plans
“marketing!!!”

Hejsvejs *// Marie Hugos mom from Sweden

Marie Hallbert
tel.+46-708-362662
tel.+46-16-131279
Ordförande Svenska/Skandinaviska FOP-Föreningen
IFOPA International President’s Council Ambassador/Sweden
Fibrodysplasia Ossificans Progressiva
www.fopsverige.se
www.ifopa.org International Fibrodysplasia Ossificans Progressiva Association

bidrag till FOP-forskningen bankgiro 5823-7140

“Though no one can go back and make a brand new start,
anyone can start from now and make a brand new ending.”-Winston Churchill

The above is a photo of, you guessed it, Marie with her son Hugo.

I’m SO impressed with Marie, and what she wants to accomplish. I think she’ll make a wonderful “FOP ambassador” in her country. We wish Marie the very best with her endeavours, and thank her for her tremendous work! We hope we’ll get to see her visit Canada or USA with her lecture.

Hello, and happy New Year to all!  I’m very excited to be writing my first blog.  I will soon put some information on the site about Miranda and our family, but for now, I’ll just tell you about New Years Day at our house in Burnaby, British Columbia.  Our household consists of me, my husband Pete, Miranda (will be 4 years old this month) and Owen (will be 7 years old this month).

I woke up this morning at 7:30 AM to “Mommy, I have wet underpants and jammies.”  Sure enough, Miranda had peed herself.  Oh joy.  This is rare for her, but happens on odd occasions.  With her arm limitations, Miranda hasn’t been able to learn to pull down her own pants, much less take them off, so I had to haul my sleepy self out of bed and take her to the bathroom.  I cleaned her up and got her changed into fresh pants, and then crawled, along with her, back into bed.  I dozed for a while, but I don’t think she really fell asleep again, and we were up by 8:30.  On New Year’s Day!!  Oh well.

Pete and I did some chores this morning while the kids played.  Normally after finishing chores, we’d take the kids outside to a playground.  However, that was not in the cards for us today, as has been the case so often this holiday season due to snow.  Snow is great, and I love it, but deep, heavy snow + Miranda = not good…  To get to the playground, which is a block from ourself, we’d have to trudge through some really deep, slushy stuff - the residue of huge snow dumps several days ago which are now melting in temperatures above freezing.  This is slippery, treacherous stuff for anyone, but for Miranda it’s doubly hazardous because if she slips while walking, she has a hard time regaining her balance due to the rigidity in her back.  The result is inevitable falls into icy cold, half-melted snow, a miserable kid, and the risk of FOP flare-ups from the impact of hitting the ground.  Assuming we would even make it to the playground safely, the conditions are no better there.  So…  We’ve spent the day in the house. 

Luckily, our house got a new Nintendo Wii for Christmas, and we’ve all been enjoying playing Wii games, especially bowling.  I wasn’t too sure how that would work out for Miranda, since her right elbow is pretty much fused in a bent position (and she’s right handed), but she’s managed to figure out how to kind of swing her whole body around and throw the ball.  She’s been enjoying this, though not to the same extent as Owen, who has become a Wii bowling prodigy who regularly beats both me and Pete (!).  Anyway, apart from that, we’ve also played Fisher Price Little People Zoo, which is one of Miranda’s favourites, plus pretend cooking supper (we cooked pretend pasta, chicken, potatos and vegetables).  We’ve also read some books.

We’ve enjoyed our holidays, notwithstanding being snowed in, but it will be good to get back to our regular routine starting on Monday.  Both Miranda and Owen will be happy to get back to school, grade 1 for Owen and daycare/preschool for Miranda, so that they can see all their little friends.  Then we begin the birthday gauntlet, as both kids were born in January…

That’s all for now - I look forward to adding more information about Miranda to this site in the next few days.Â

We’re getting ready to celebrate the holiday with our family.  Between myself and Sean we tried all different ways to get Mom down here for Christmas.  I was going to go pick her up but we may get a special visit from Santa this evening.  She originally bought a bus ticket from Greyhound; however b/c of all the snow  Greyhound canceled trips.  Then Mom developed a fever so she’s staying up in Bellingham.  We’ll have our Christmas with her once she is better.

My brothers Mike and Sean will be here to help play Santa tonight.  Erin is very much into Santa.  Every morning she asks, “Where is Santa?”  I tell her Santa is at the North Pole getting ready for Christmas but I don’t think she gets it.  She is enjoying the Christmas shows we recorded.  Forget Bass/Rankin shows, all she wants is Wubbzy…ugh.  Erin isn’t feeling too hot right now either.  I suspect her cold is aggravating her FOP as well.  She’s not sleeping very long at night but takes extra long naps during the day.  But start talking about Christmas and Santa…she perks up!

Hope everyone has a wonderful holiday.  I’ll post pictures of our Christmas in a few days.

After reading about the passing of Ricardo, another adult FOPer (Robin Rice) responded to the online group and eulogized Ricardo so beautifully.  He also shared the struggles Ricardo had faced in his life.  With his permission, here is a part of the email he shared to the group….

“Ricardo & I were good friends and we emailed each other often, the last email I got from him was on December 6, he told me he just found out he had Pneumonia and the DR said it was very bad, he was getting treatment at home, I never heard from him again after that email… 

Those who knew Ricardo, knew of his kind spirit and determination to get around all the barriers in his life one way or another, he will be surly missed by all who knew him, including myself. I’m sure this is very difficult for the FOP people of Argentina, and his good friend Moira, Mother of Manuel. Ricardo had been suffering a lot in his last few months of life, and is now in eternal rest and peace. Although he is now in a better place than we are, and no longer suffering, he will always be missed by all of us that knew him, he was a part of our FOP family, and we all feel it when one of our own passes beyond the veil. I will always cherish the friendship that I was so fortunate to have with Ricardo…” 

Robin also shared how Ricardo’s home life was not a supportive environment.  Apparently over time, Ricardo’s family resented that they had to take care of him.  Ricardo had shared with Robin that his family treated him poorly.  According to Ricardo, his family would leave spills and things on the floor for him to slip/trip over.  Recently one of his siblings purposely tripped him out of anger.  Reading Robin’s email sent daggers through my heart.   When I responded to Robin personally, he shared his story and I am absolutely dumbfounded.

I am still trying to formulate my thoughts and feelings into written words about this.   I’ve been working on this post for some time now and each time I review what I have typed, I feel like I am missing something.  I think what I need to share is Robin’s email to me. 

“I think that Ricardo and I were such good friends, is because we understood each other so well, we both came from families that didn’t care about us or care for us. Ricardo’s family did many horrible things to him to make him suffer even more, it’s very sad. I live alone, with very little help, I haven’t seen any of my family members in many, many years, in fact, I live in CA all alone, I don’t have a single relative anywhere in the whole state. They all live back east. My mother was killed in a car accident when I was 7 years old, my dad died in 2001, my half brothers and sisters all live further east, but we don’t talk or visit or communicate, it’s really sad, they are all aware that I will soon have to go in a nursing home, but they don’t care at all. Ricardo and I shared a lot of sad, emotional and personal stories, very painful stories about our lives. Ricardo really is in a MUCH better place now, I actually envy him, and I’d gladly join him in a New York second. I’m 38, and have advanced stages of FOP, I also have chronic and very severe pain 24/7, not even all the strong pain narcotics give me any relief, I also get very little sleep due to the pain and not being able to get comfortable, since my body is bent over, crooked and bent my different ways.“

My heart aches on so many different levels.  I am scared to think of what could happen to Erin if something happen to myself and Alan.  In my mind I have a tentative plan if it’s just me and Erin.  Regardless, I am prepared to care for Erin throughout her adulthood.  To not have family support…oh my God…  How crazy our family can be, I may need a time out to refresh myself but I would never abandon my family.  

Luckily Robin has Milo his service dog.  Thank goodness he has Milo and the FOP community.  Robin, thank you for allowing me to share your story.  I am keeping you in my thoughts!

I guess a good portion of the country is experiencing a cold snap (except the south from what I have been told).  We waited all day yesterday for the snow storm to push down from Canada.  A good portion of Washington received the snow but we were in a bubble that covered the Seattle area which didn’t receive anything until late afternoon.  The school district even closed down with the threat of snow which finally started here in Woodinville at 5PM.  By 7:30 we had a good inch covering everything.  By 8:30 this morning we had three inches and the snow hasn’t stopped yet.

Erin wanted to play in the snow last night to build a snowman.  We told her she could go out today and she has.  Once she’s out, she doesn’t want to come back in.  Alan and I have been taking turns watching her and taking her for walks.  She’s making snowballs and trying to eat the snowflakes.  Erin is having a good ol’ time outside.

On a sad note, the FOP community lost a fellow adult FOPer.  Ricardo Pistoletti from Argentina passed away Tuesday night from complications with pneumonia.  His family is in our thoughts and prayers.

I had not realized the time gap from when I posted on 12/5 until 12/15.  I was so excited to publish the last post I hardly noticed how much spam the site received in that length of time.  Something new that I learned by running this site is that there are professional spammers out there.  Funny how most of the spam the site attracts are for prescription drugs…Percocet, Vicodin, Hydrocodone, and even Viagra.  As I went to hit the “delete all spam” button, one in particular caught my eye.  It read, “I took Hydrocodone during my pregnancy and had a healthy baby!”  WTF (not going to be polite about it)!!  I did everything I was supposed to during my pregnancy with Erin (well, minus the day I ate a pint of ice cream for lunch a couple hours before a diabetes test).  Not fair!  I am telling myself it’s just spam, but it still bugs me to no end.  Then I was flipping channels the other night and I landed on TLC.  There was a documentary on the “Mermaid Girl” in Maine.  Her father said they would have had better chances on winning the lottery than having a child with this syndrome.  Yes!  Yet another parent who understands my pain and frustration.  We’re a small group of parents who once would have dreamt of winning the cash lottery, and were lucky enough to have won the lottery with our children (and we really have).  There are moments when I don’t think life is fair and ask why did this happen to our baby.  Oh I know, “she’s going to have a greater purpose in life”…”we’re going to learn so much from her”…”she’ll touch a million hearts along her journey…”  But right now in this moment I need to brood in my feelings.  I guess I have Hydrocodone spam to thank for my recent set back.  It may have spun me for now, but I’ll recover.

I received an email from the producer of Ashley’s FOP story for Mystery Diagnosis.  The air date is set for March 2, 2009.  Whoo hoo!!!!  Those who helped contribute to the story will receive a copy of the episode on DVD.  Double whoo hoo!!!!  I can’t wait to see how the episode turned out.

It has been a while since I provided an update.  Erin is doing okay right now.  She has her good days and then she has her bad days.  She’s still complaining that her neck and shoulder hurt.  Erin has been taking her Naproxen like she should.  I’ve kept her inside quite a bit.  In the mornings, I get her situated with a cup of milk and her new favorite movie (Barbie’s Nutcracker) while I take the older kids to the bus stop.  We had some snow over the weekend and the temperature has dropped into the teens.  She wanted to go out so bad to build a snowman.  I told her that we didn’t get enough snow to build one.  In the end she was fine with cuddling on the couch with Mommy and watching her Christmas shows.

Erin is due for an appointment with the genetic counselor at Seattle’s Children’s Hospital.  That’s been on my to do list for a while but I keep forgetting.  Larkin has another evaluation at the Autism Clinic at Children’s in February.  He’s been evaluated for Asperger’s but the evaluation team needs several years of collecting data on him to make that diagnosis.  The team did give him a diagnosis of “Mixed Developmental Delay” or something like that.  Since he’s been scoring in the borderline area of Asperger’s he will continue to be evaluated annually.  Lovely stuff!

Otherwise we are getting ready for Christmas.  I hope to update everyone again sooner than later!

I am SOOOO happy to announce that I have big changes planned for the website.  Alan is going to add new features AND we’ll be showcasing Erin and Miranda Friz.  You’ll not only get to read about Erin but also about Miranda.  Now everyone will be able to see the similarities and differences in both girls with their FOP progression.  I am really, really excited about the changes.

Another FOP family has joined up with a local civic group to host an annual bingo event to raise money for the IFOPA.  The event will be near Allentown, PA.

 Save The Date!

IFOPA Bingo For A Cure!

Tickets are on sale now! They make a great holiday gift!

Please pass on this email to everyone you know and help us find a cure! Thanks !!!!

 

 March 29, 2009

At the Allentown Fairgrounds, Agri-Plex Hall at 1:00pm

Tickets - $30 in advance or $35 at the door

Ticket package includes atleast one board for each game we play!

Tickets are limited so buy them early!  Last years event sold out!

All games have a CASH prize of at least $200.  Guaranteed $4000 payout.  Our grand prize will be $1000 in cash!  We will also have lots of exciting raffles, drawings and a huge chinese auction.

 

Refreshments will be available for purchase.  This is a non-smoking event.

 

BINGO sponsored by the Emmaus 4th Alarmers

All proceeds benefit the International FOP Association (IFOPA) in honor of Joshua Scoble

 

Joshua Scoble, of Allentown is a 2 year old little boy who was born with FOP.  Fibrodysplasia Ossificans Progressiva(FOP) is a rare genetic disease that causes his muscles to turn to bone, prohibiting him to bend at his joints.   If you would like to learn more about Joshua and FOP you can visit our NEW web site at www.BingoForACure.com 

With the help of funding, a cure is within reach!!!!!!!!

 

Tickets can be purchased at Buss Paint and Wallpaper in Emmaus or you can send a self addressed stamped envelope

with your check payable to “Bing For A Cure” to:

 

Buss Paint and Wallpaper

327 Main Street

Emmaus, PA 18049

 

If you have any other questions please email Chrissy Flexer at Cflexer20@aol.com

 

We are also looking for businesses or people to sponsor the “cash” game prize money.  And we also are excepting monetary donations of any amount or items that can be used for our chinese auction.  For more info please contact me cflexer20@aol.com

So I am coming to the conclusion that Erin is just a “Mommy’s girl.”  She did so well a few weekends ago when her Uncle Sean watched the kids while Alan and I went to Lake Chelan for our anniversary.  I ended up driving a good part of the way which included driving over Steven’s Pass in a snow storm.  As I was concentrating on trying not veer off the road, my thoughts drifted to Erin on how she was handling Alan and I being gone.  In the end, she handled our separation much better than I did.  When Alan and I arrived home on that Sunday, Erin was asleep on her couch in a deep sleep.  I had to wake her up.  I thought she would be so happy to see Mommy and Daddy home, but I was wrong…very wrong.  Instead she went into a whiny fit about how she hurts.  Sean swears she didn’t complain at all while he was with her (and I believe him).  She either handles the pain quite well while I am gone or she holds it in until she sees me (maybe a little of both).

I am happy to report that she may be in a slow phase of her active FOP.  Her back still morphs slightly but nothing too shocking for us.  I have not given her any Naproxen in over a week (wow…really?).  After my meeting with Mrs. Killen and the specialists, I was determined to find her a different jacket for school.  Sean and I went to the Disney store’s midnight after Thanksgiving sale.  I bought this cute winter poncho in which she doesn’t need to force her arms through sleeves.  I thought I hit the gold mine on the poncho…no sleeves and it keeps her warm.  That was until I put on her harness for the bus on Monday.  I put the harness on her and it totally defeats the purpose of the poncho.  Her arms and part of her trunk are exposed to the weather after the harness is zippered on.  UGH!  I can’t win.  However, she LOVES her new poncho and that works for me.  I absolutely loved the little green/pink coat I found at Osh Kosh’s outlet store.  I even thought of taking it to a tailor to have a zipper added to the back of the coat so we can put it on her easier.  She’s in love with her princess poncho and I am good with that.

Our friend Tina is still working hard on selling the remaining items from Erin’s charity garage sale.  That is why we have the Craigslist items uploaded here.  Thankfully our visits to Seattle’s Childrens Hospital has slowed down now that we have a diagnosis.  At least we have stopped running up doctor bills for now.  We still have medical bills accumulating; however I can see the light at the end of the tunnel when it comes to medical bills.  I am looking forward to raising awareness of FOP instead of worring about how to pay the bills that keep coming in.  The bills will always be there.  I look forward to the time when I can do more for the IFOPA.