Surfers pitch in for young hemophiliac

So, a friend showed me this article and I think it is just awesome! I've attached a photo so you can see the ridiculous helmet I had to wear when I was a baby. But when it comes to safety your parents don't care what you look like.  I guess I really did have a face only a mother could love. I hope you enjoy this article as much as I did.

Looking out over the water from the backyard of her Ketch Harbour home, Michelle Howell pointed across the bay to the tip of a headland while keeping an eye on Callum, her two-year-old son.


"Sometimes, we get surfers out past the point," she said Thursday. "It’s neat; they’ll walk all the way out along the shore to get out there."


A split second later, she darted off, chasing after Callum while her four-year-old daughter, Freya, played quietly nearby.

Callum has hemophilia A, a rare, genetic bleeding disorder that affects about one in 10,000 people in Canada.

Like other hemophiliacs, Callum’s blood doesn’t clot normally, meaning an innocuous tumble in the backyard could have very serious consequences. A fall on his knees or a tough spill onto the bum could cause lasting damage to his joints. A hard knock on the head could easily cause a life-threatening bleed.


It means Howell is constantly on her son’s trail, literally shadowing his every move and watching him like a hawk to make sure she’s there to catch him when he falls.



During the past nine months, Callum has been hospitalized eight times and Howell said they’ve visited the IWK Health Centre more than 100 times for blood infusions, a treatment that helps mitigate bleeds.



To help reduce their trips to the hospital, Howell tried to find something that would help cushion Callum when he fell.



"We tried a few things," Howell said. "We tried to cut up yoga mats. I even used lining for cupboards, but none of it held up really well."



Howell and her husband, Colin Guthrie, both avid sailors, then decided to cut up an old neoprene wetsuit to see if it would work.



The thick, rubber-like material turned out to be perfect for the job.



But the young boy quickly outgrew his first wardrobe, and his parents were out of wetsuits, which can cost upwards of $400 brand new.



With nothing suitable commercially available, a volunteer at the IWK suggested Howell contact the webmaster of ScotiaSurfer.com. They did and a short article was posted on the website outlining Callum’s condition and the family’s need for more wetsuits.



"The response from the surfing community has been great," Howell said.



In the month since the post went up, she has received eight wetsuits from surfers. Some of them told her they were more than happy to donate their wetsuits because it was a way to reuse a petroleum-based material that would otherwise be bound for a landfill.



Now she’s giving new life to old neoprene wetsuits used to protect surfers from the cold North Atlantic waves by transforming them into protective clothing for her son.



With the help of her mother-in-law, Vivian Hall, she’s sewn thick strips of neoprene on the elbows and knees of Callum’s shirts and pants to provide extra cushioning to the areas most susceptible to damaging internal bleeds. Anne Vaughan, a social worker at the IWK who works with Callum and other hemophiliacs, said it is the first time she’s heard of wetsuits being used as a cushion for hemophiliacs.



She said it seemed to be working and that was important because hemophiliac toddlers need to be able to roam and explore in order for proper and physical development to occur.



"It’s just in those early years where they need . . . a little bit of extra protection because they don’t know how to protect themselves," she said.



Vaughan said Callum is one of the country’s most challenging cases because "this little guy has an exceptional propensity for bleeding."



Howell hopes to convince local surf shops to accept donated wetsuits. Currently she’s meeting with people in random parking lots around Halifax.



And once her son’s situation stabilizes, Howell hopes to continue to create protective clothing, which she plans on donating to hemophilia treatment centres across the country.



"I feel like we’ve had really good support and I’d like to continue that, to reciprocate."

By GEOFF BIRD

Carter's Quest For A Cure A Success!

So, this weekend was my Dad's 60th birthday celebrations. It was so nice to have my family around for the weekend. I wish they could be here all year round. I think my Dad had a really great birthday and I could tell my dad had a great time too.
This weekend was also, Mall at the Hall. We raised over 5,000$ for Hemophilia. It was amazing to see all the support and all the people that came out for this event. I spoke with Jenny, the organizer today and she said she is thinking of giving all the money to the Canadian Hemophilia Society's Million Dollar Club. http://www.hemophilia.ca/en/about-the-chs/to-support-us/hemophilia-research-million-dollar-club/.
This club is all about raising money for research for Hemophilia. I think this is a great idea and I am so proud of Jenny but it wasn't still she said, "We will donate the money to the Million Dollar Club so they can find a cure," that I realized I have never had any hope that they would find a cure for Hemophilia in my lifetime.
I consider myself a positive upbeat person but I have never dreamed of a cure this whole time I have been hoping and praying for a recombinant factor 5.
I also realized that my reasoning for joining the Hemophilia society was to raise awareness more so than to raise money for a cure.
Either way, we are all in it to improve the lives of lives for Hemophiliacs one way or another.
Another thought that occurred to me this weekend was that it would be so nice to have a family member with Hemophilia.
Of course, I would never wish this disease on anyone but it would be great to have a someone in my family who knew what I was going through.

Happy 60th Birthday Dad

So, today is my Dad’s 60th birthday! My Dad and I have always had a close relationship even if we weren’t always close in proximity to each other.


We also look a lot a like! My mom always tells me the story about how she and I were in West Edmonton mall together when I was only a few years old and someone said to her, that must be Howie Radford’s daughter.

One of the best times dad and I had together was when I was about 12 years old. I was really sick and had to spend a year in the Janeway Children’s Hospital. My Dad flew down from Alberta and spent a few months with me in the hospital while I recovered. Even though I was in the hospital we had an awesome time together. We coloured and made arts and crafts watched tv and movies. We also spent many hours starting at Where’s Waldo books to see who could find him first. That visit really helped lift my spirits and my Dad really encouraged me to stay strong and get better. Eventually I was released from the hospital and my dad went back to Alberta. I was happy to get out of the hospital but I was also very heart broken to not have my Dad around anymore.

My Dad also makes me laugh more than any other person I have ever met in my life. Zane always says that he never hears me laugh as much as when I am around my Dad.

Since we now live in Calgary I get to see my Dad all the time. I call him every night and I get down for visits whenever I can. He is always there to support me when I am sick and helps me with life decisions. I can’t remember the last birthday I got to spend with my dad and I feel very blessed to be with him today!

Carter's Quest for a Cure

So, as you know I am helping my friend, Jenny with her fundraiser called Carter's Quest for a Cure. It's been a lot of fun organizing it and it has been amazing to watch this grow from an idea in Jenny's head to a huge fundraiser that's taking place this saturday! It's amazing what can happen when people get together for a cause.
Calgary hemophilia group holds fundraiser

Carter’s Quest for a Cure takes place Saturday

By Lea Storry, Calgary Herald April 6, 2011 4:20 PM CALGARY -- A city mother just wants to take care of her son and is hoping others will help her in the fight against hemophilia.



World Hemophilia Day is coming up and Jennifer Ruklic and a small group are marking the occasion with Carter’s Quest for a Cure, a fundraiser on Saturday. Ruklic is Carter’s mom, and her two-year-old son suffers from severe type A hemophilia.



“Carter can’t clot his own blood,” Ruklic explained. “He needs a synthetic factor, and he gets IV infusions once a week. I do this at home, and from start to finish it takes about 20 minutes from getting his hands cleaned to the end of the treatment.”



Ruklic said she is amazed the youngest of her two kids can sit still for that long. He does wiggle a little bit, admitted the mom, but otherwise he’s a regular boy who loves to swim and play with his seven-year-old sister, Cassie.



Carter’s Quest for a Cure is taking place at the Glenbrook Community Hall at 3524-45th Street S.W. on Saturday from 10 a.m. to 4 p.m. There’ll be home-based businesses such as Epicure and Stella & Dot as well as a bake sale and raffle.



“It’s a worthwhile cause,” said Ruklic. “My son is only two years old and he can’t be his own advocate. He relies on the love and caring of the people around him.”



All proceeds will go to the Canadian Hemophilia Society, Southern Alberta Region. World Hemophilia Day is April 17.



lstorry@calgaryherald.com
© Copyright (c) The Calgary Herald

From a different point of view

So, today I had an interview for a magazine in the states. They are writing an article about how social media is connecting people in the Hemophilia community and decided to write and article about me. I am really looking forward to reading it and I really enjoyed doing the interview today. I will post it as soon as it comes out. In other news I have been told that I use too many exclamation points so I am putting a stop to that!
This post is from a friend I work with on the National Youth Committee of the Canadian Hemophilia Society. His writing shows how Hemophilia affects not only the person living with Hemophilia, but also, the family. I hope you like his writing as much as I did! Also for the french translation visit http://generation-clot.blogspot.com/.



How Hemophilia has affected my life: from a different point of view.


I would like to start off by saying, unlike most writers on this blog. I do not have hemophilia, or von willebrand or any bleeding disorder of any sort; in fact you could say I am the exact opposite. My wounds heal extremely (and I do not use that term lightly) fast. Recently I have suffered a VERY bad wound while working which involved me slicing my arm open near my wrist and cutting some serious veins opened, so we rushed to emergency. When we arrived I took the towel off my arm, which was soaked in blood off to the surprise of my wound not bleeding what so ever. The doctor was astonished that it was not bleeding. He proceeded to tell me that it should have been a life threading injury and was puzzled how it healed so fast. Well that all about me, now for the good stuff

So you are probably now wondering how I am even connected to hemophilia after hearing that little blurb. Well ill start off at the beginning of this. My younger brother was born 3 years after me. About the time he was 1-2 years old he kept getting swollen arms and knees, we would keep taking him to the doctor he when through lots of x-rays and they could never figure anything was wrong, so he would end up getting casts because they thought he had broken something. Now for whatever reason when he was about 3 years old they decided to do some blood work on him, and they came back with some strange results, he was a severe hemophilia A. at first my parents had no idea what this was nor did any of my family. That is right none of my family back further then 120 years had and bleeding disorder that we knew of. My entire family and I (from my generation to my great grandparents) went through numerous blood tests (which I did not enjoy one bit being 6 years old) and came up with nothing after 3 tries for all of us! So they finally labeled it as a genetic mutation. We first went to a Nova Scotia hemophilia family weekend and meet a load of new people that had the same problems and they were all very nice and we had a great time. They had made it easier for my parents and my brother in many ways, including stress relief. My Father went on to become the president of the NS chapter for numerous years.

Now I am getting older and I would love to help give back to the Hemophilia society. I have been volunteering with our provincial summer camp for 4 years, which is a blast every year, for young and old! And now I am part of the national Youth committee. Everyone I have ever met from the effect of hemophilia is amazing, and I believe that hemophilia has changed my life for the better! I hope to someday be a “big wig” somewhere, anywhere! I could help out in this massive loving society. And to give back what was given to my family while struggling with my brother diagnosis of hemophilia. In this community you don’t have to have a bleeding disorder to fit in, you just need a passion. Anyone can help out here, bleeding disorder or not!

Six-Word Memoirs

 So, I found this awesome book, Not Quite What I Was Planning, Revised and Expanded Deluxe Edition: Six-Word Memoirs by Writers Famous and Obscure
It challenges you to write six words that describe your whole life!

Here's mine
Lived Laughed Bled Cried Almost Died.

What's yours?

Greetings from India!

So, as I have mentioned before I have met lots of Hemophiliac friends from India! They are wonderful friends and we have been talking a lot about how we can improve the quality of life those living with Hemophilia. The following is from the Youth Group in India! If you would like to help out please let me know!

When you are young, you have lots of ideas and a free spirit and loads of enthusiasm to change the world. You not only understand the problems around you but you have innovative and new solutions for most of them. Someone just needs to guide you and nurture you to be the MAN/WOMAN you want to be.


National Hemophilia Youth Forum of India (NHYFI), a youth wing of Hemophilia Federation of India (HFI), was formed in 2004 as a platform for young haemophilic voices in India to be heard. HFI powered NHYFI with an organizational structure, manual, roadmap and a constitution to function. NHYFI now serves as a playground for the young budding leaders to get involved. Hundreds of youth across India today meet to help improve the quality of living for those living with Haemophilia.

NHYFI is built across a shared vision, value system and culture that bind the Haemophiliac youth with friendship and the feeling of belonging.

The broad goals of NHYFI are:

• Create Education and Employment opportunities for the youth across India.

• Create a self sustaining support chain for the youth.

• Build next generation leaders of the HFI.

The founding belief of NHYFI is that by empowering and guiding the Hemophilia youth today we are building a stronger and self sustainable Hemophilia community for tomorrow. HFI in sync with NHYFI arranges many activities to address youth issues such as education, marriage counselling and hemophilia care in general. In the last six years many young men and women of India have been benefited from these efforts. Many more shall be reached soon. We have a lot of obstacles in front of us but our spirit to win them over is greater.