Jul 30, 2014

Successfully Raising a Child With Hemophilia

Treatments every other day has allowed Vincent to live a normal life.

Successfully Raising a Child With Hemophilia Successfully Raising a Child With Hemophilia Successfully Raising a Child With Hemophilia

Imagine what life would be like knowing you had a 50 percent chance of having a child born with a debilitating illness?

That’s exactly what happened to Lauren Barbounis when she gave birth to Vincent six years ago. As a carrier of hemophilia herself, Lauren and her husband knew the odds were decent that their new baby would be affected by hemophilia.

In fact, when Vincent was born, he was diagnosed with one of the most severe kinds, Hemophilia A. Simply put, his blood could not clot like most people. A simple bruise or bleed could have Vincent bleeding for hours or visiting the emergency room. Early on, Lauren had to pad his crib, be careful of sharp corners throughout her house and be pro-active to avoid bleeds. 

What would Vincent’s future look like? Could he participate in sports? What would happen when he began to walk? 

When Vincent was just 8 months old and having regular immunizations, the shot into his fatty tissue around his muscle began to bleed and would not stop. Lauren shares how that visit to the emergency room felt:

"I am sure any of you who are parents can imagine how I felt having to hold down my 8-month-old baby while he is bleeding all over, it was literally the worst experience of my life. Once they went for a vein in his head, I decided I never wanted to subject my child to this again. Six weeks later, Vincent had surgery to place a port in his chest. This gives us direct access to his veins. We started doing what is called “prophylactic treatments.” We infuse Vincent every-other morning with medicine to make his blood clot. We have been doing this for 5 years (close to 1000 infusions!!) in April, and have been bleed free! He is now able to play and do things a “normal” clotting child would be able to do. Infusions have become part of our routine, just like brushing his teeth."

For Vincent and his family, infusions are now their own new normal. Vincent can now play t-ball, participate in basketball, and even attend kindergarten at Walt Disney Elementary in San Ramon without the worries of whether he will bleed uncontrollably. Yes, Vincent has hemophlia, but he is a normal child who lives life to the fullest!

On April 21, Vincent and his family will walk in the 3rd annual Hemophilia Walk, sponsored by the Northern California Chapter. To learn more about this walk, visit here.

His team, “Vins Fins” hopes to raise lots of money to help other families who are afflicted with this condition. Lauren shares, “The money is used to help families if they lose insurance. Boxes of meds can cost anywhere from $1,500 to $3,000 per box. We use 15-16 boxes a month so you do the math!”

Money raised also pays for summer camps for children with hemophilia, support groups for those who are newly diagnosed, and even helps families who must devote all their income to medicine with paying the rent or day-to-day living.

If you would like to help “Vins Fins” in their walk, please visit Lauren’s fundraising page at: http://my.e2rm.com/personalPage.aspx?SID=3271280&langPref=en-CA

This year, the family is also holding a garage sale on Sunday, April 15 at 9937 Mangos Drive in San Ramon. All money raised will go to their team "Vins Fins" for the walk on April 21st. Stop by and shop on April 15th, or if you have items to donate to the sale, please contact Lauren at  vinsmom9@yahoo.com.

Last year, “Vins Fins” raised over $5,000, and the goal this year is to raise at least $8,000.  Let Vincent inspire you, as he shows us all that Vincent is just like every other child—he just lives a “new normal”!

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