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Sunday, April 13, 2008

SpringFest!


It doesn't feel quite like spring yet in New England, but Saturday was SpringFest, the New England Hemophilia Association's annual family symposium. I was very happy to be home, so I could attend this event, a mere 15 minutes from my house. Our new executive director of NEHA, Kevin Sorge, said it best: "This is like family." And it is. We were reunited again, for some of us 20 years now, our sons grown but our desire to see this community continue to progress still burning bright.

Even some of the pharmaceutical and home care reps have been part of our lives for 12-20 years. How fast it has gone by!

Linda Price of Virginia will be thrilled to know I finally met her son Greg, now living in the Boston area. Last time I saw Greg he was about 10. It was a lively time, because of how long we've all known each other and how rarely we get to see one another.

The speakers and topics were good, and the turnout was excellent, despite the rain. There were lots of children, and teens. My own son couldn't make it, and he missed some of his long time hemophilia friends.

The highlight of the day without doubt was a moment that reduced us all to tears: an award ceremony, with our shining star, Leland Smith, age 15. I first met Leland when he was only a toddler. He has hemophilia, and a devastating inhibitor that at times keeps him wheelchair bound, as he was this day. I know his story well, and I can tell you that not many people has endured suffering like this child. The time he has spent in the hospital, the treatments he has undertaken, the missed school, the excruciating and unrelenting chronic pain; and yet he wants to be a doctor, and is an active lobbyist for NEHA. He has traveled to Washington DC and also to the Massachusetts state house to present himself, to help NEHA get bills passed to protect the rights of those with hemophilia. To know how much this kid has gone through, and to see how at such a young age he is active socially, well... we all crumbled inside in admiration of his character and his strength. Leland reminds me of the words: It is in the deepest valleys that the stars shine brightest; it is pressure that turns coal into diamonds. Congratulations to Leland, a true leader of a new generation of young men with hemophilia. Thanks for making such a memorable day for us all!

Great Book I Just Read: Mawson's Will by Lennard Bickel.
Speaking of pain and suffering, you haven't read anything till you have read this book. Dubbed the greatest polar survival story ever, this tells the true story of Douglas Mawson, a giant in the age of polar exploration in the early 1900s. Mawson, an Australian, was already a veteran polar explorer at age 29 when he traveled to the Antarctic in 1911 to seek the magnetic pole and to chart unknown territories. Splitting into three groups, he and two other men part with his crew for a few months and enter the incredibly hostile terrain. Mawson loses both men on his team and is left utterly alone, without enough food, shelter or dogs to see him back, in 50 degree below zero weather with gale force winds.... for one month. How he survives is a page-turning, gripping and miraculous tale. Mawson is responsible for Australia's claim to 45% of the Antarctic. His tale is legend. This was the fourth time I've read this book and it gets better each time. Four stars!

5 comments :

blood4 said...

Leland!!
Congratulations and know that you are an inspiration for many young boys with hemophilia here in Brazil!
A big hug from Frederica , Edson, Felipe, Breendon, Jozine, Caio to start.
Laurie, thanks for your energy and good ideas always
helping others to not be afraid of challenges. :)

Anonymous said...

I want to share a little story of the magic of Springfest:
I had the pleasure of escorting a beautiful 5 yr old child to the fun and excitement of Springfest. It was his first exposure to the compassion and kindness of such a wonderful group of people.(he also had never socialized with another child with hemophilia) Every one couldn't do enough to make this weekend happen for this child. Contributions from Sandy Williams @ HHS, Jane Smith and the NEHA connection, Janice Yorke and Randy Hicks from Bayer for the fabulous get together at dinner time and then again at breakfast and especially the water park admission tickets. The generousity continued with teens like Haley(13) Taylor(12) Matt(13) and Zack(11) jumping right in without being asked, making certain he was safely having fun.
There were multiple impromptu sleep over invites from a number of families with a final crib crashing with the Willis family Sat. night.(which ended in a chorus of "99 monkeys jumping on the bed" at 11:30 at night.
My little guest observed for the first time other children recieving factor and prior to watching one of his new little buddies recieve his factor, just before the butterfly needle entered the vein, he commented " I feel bad for him". His new buddy, Jack, started to smile and told him it would be OK. He then wanted to help his new friend by holding the gauze and applying the bandaid.
The magic continued yesterday morning during a routine visit at the child's school by one of my nurses Donna. Donna couldn't wait to share the change in the way this child participated in his infusion yesterday. He greeted her with a smile and asked if he could mix and "do everything" He proudly stated he could "do it better than her" and that he "knows everything"
Later that day he needed to be seen at home with his dad. Dad was attempting to mix the factor while I was on the phone with the MD and from the corner of my eye, this child was CORRECTLY insructing dad on how to mix the factor ("Poppy, take the blue cap off and wipe with the alcohol, then put the WATER FIRST on the table and push in the blue cap....then put the other bottle on the table, and push the white cap into that bottle, and when all the water is gone then take off the blue part" He explained all this to dad inbetween tears from the pain of a new injury. Dad gave him a hug and then promised he will most certainly be at the next NEHA family event!
Through the years of working with such a compassionate group of people I have collected a number of heartwarming stories that I have kept close to my heart but, because of the communal effort, some of these stories just need to be shared.
My thanks to all for these magical moments.

Kathy Byrne, RN
Infusion Ventures

judy c said...

Laurie Kelly's reference to "pressure that turns coals into diamonds" is a perfect metaphor for Leland's approach to living with hemophilia. Leland, YOU are an inspiration to us all to take up the challenge whatever it may be and do something good with it! Congratulations to you on the award and thank you for sharing your powers with us!

Love you,

Allen, Jude, Travis, Will and Liberty

judy c said...

FROM GRAM IN BARRINGTON by way of the Conaway account:

Leland,

CONGRATULATIONS!!! I am so happy that you are being recognized for your EXCEPTIONAL contributions. Sending you lots of love,

Gram

blood4 said...

HAPPY DAY! 17TH OF APRIL!
DAY OF HEMOPHILIA......:)
hugs
frederica

 
Bayer