Have you ever had a dream that you just knew you had to fulfill?  Something you just knew your life would not be complete without?  So it was for “Brownie”, a thirty-something airline pilot living (and flying) with hemophilia.

Brownie started flying at the ripe old age of ten.  His first flight lesson recorded in his logbook is dated 1986!   He even remembers how he had to sit on phone books to see out the window, and his flight instructor had to strap blocks onto his feet so he could reach the pedals for his lesson.  He says, “Almost since I could talk, I have talked of becoming an airline pilot.  I waited until I was ten because that was when I could help out enough around the house to earn enough money for a flight lesson!”

His dad was a private pilot and he says his parents were a huge positive influence in his life.  “They taught me from a very young age, that I could do whatever I set my mind to,” he states.  He says he has been told that he used to fall asleep in the back seat of his father’s plane before he was old enough to know what was going on.  He and his dad still share a love of flying today.

When asked if his having hemophilia got in the way of his dream of flying he said, “My hemophilia has been a significant hurdle in becoming a pilot and continues to provide challenges in my career.  I have never been as concerned about my hemophilia as the FAA is!”  Each year he has to pass a flight physical along with all other commercial pilots, the only difference is, he also has to obtain a note from his hematologist stating that he is healthy enough to fly.  He says, “I have had to work harder to get my medical certificates than the average pilot, and this has made me more appreciative of my opportunities.”  Brownie infuses prophylactically to avoid any problems with his flight schedule and he always makes sure that he has factor with him when he flies.  “There is no time for a bleed when you are running on such a strict time schedule,” he says.

As if flying with hemophilia wasn’t enough, Brownie is also an avid hunter and fisherman, even though as he replies, “my wife probably wishes that my dad had never exposed me to the outdoors!”  Depending on the season, he is either hunting or fishing on his days off.  He has been tournament fishing since about 1993 and hunts mule deer, whitetail deer, waterfowl, turkey and pheasant on his families’ ranch in Nebraska.  He also hunts near his home in Kentucky for waterfowl, deer and turkey and in Texas for dove and quail.  He says, “Hunting involves a lot of walking and hiking over some treacherous terrain, while fishing requires standing for up to nine hours straight.   The joint pain gets harder and harder to overcome, and I am sure that at some point I will have to slow down – but for now I figure I better get it done while I still can!”

Many dreams have come true for our friend “Brownie”.  When asked if there was ever a time when he thought his hemophilia might get in the way of achieving his dream he said that he actually quit flying for a while when he went to college.  He assumed that the FAA wouldn’t allow him to get the medical certificate needed to be a pilot.  He nearly gave up his dream and began studying agriculture management at Texas Tech, but when he learned he could get his medical certificate he went to flight school in Oklahoma to finish his flight training.  “Never let anyone tell you what you can’t do,” he says.  “There were times that I thought it wouldn’t be possible, but determination and perseverance pay off.”  Brownie let his dream lead him to the skies and he is flying high with hemophilia!

Twenty –one year old Andrew Schnitker has always loved football and hockey; and even though he has severe factor VIII hemophilia, these sports will continue to be a huge part of his life.  That’s right, because even though Andrew can’t play these sports due to two target knee joints, he has high hopes of becoming a sports broadcaster after his graduation next December.

Andrew grew up in Dallas, Texas, and also has a brother who has hemophilia.  His mom knew she was a carrier because her dad had hemophilia, so she knew Andrew would have hemophilia before he was born.  “The thing I like least about having hemophilia is having target joints; both of my knees are bad. I had a port a cath from age 5 to 13, and started prophylaxis then since I started developing target joints before I was five because I had an inhibitor,” he recalls.   Andrew’s parents kept up his prophylaxis and he eventually beat his inhibitor.

When he was a boy, Andrew loved to watch the Dallas Cowboys football games and remembers watching the Dallas Stars hockey team win the Stanley Cup with his dad.  He really wanted to play, but was never allowed to.  “Mom and Grandma wanted to keep me safe,” he says.

Since Andrew has always loved sports, and has been acting since he was five years old, he has found a way to combine the two into a career.  He has been studying communications at the University of Texas in Austin, and hopes to someday have a job in the sports field.  You see, there is more than one way to have a career in sports; Andrew hopes to possibly be a sports writer, editor, producer or reporter.  He says, “I love sports, it’s something that brings people together, and to see the drama unfold is a thrill.”

Andrew is the president of his fraternity and says he has spent the last four years teaching all of his fraternity brothers about hemophilia.   He says, “I would rather have people ask questions and learn about my bleeding disorder than try to hide it or be embarrassed by it.  It is a disorder that not a lot of people know about and I want to clear up their misconceptions.  I would never want to use this disorder as a crutch.”

Andrew currently does a Radio show on campus.  “I’ve been the sports director on 91.7 KVRX for a year.  I do the Longhorn College sports talk, it is an FM spot Tuesdays at 7:00PM,” he explains.   He started out as a guest on the show, and finally was given a show of his very own.  He jokes, “I just kept volunteering until they gave me my own show!”  He says, “I have also done an internship with ESPN radio.  I love it because you get to create a character.  You can show up in athletic shorts and a T-shirt, it is such freedom- so enjoyable.  It’s a stress release for me.” He says he is not sure what his eventual job will be, but for the summer he has an internship with the CBS affiliate, doing sports writing, producing editing, and maybe even some reporting.   He is excited about his future and says he can’t think of anything better than to get paid for doing something you love.  He even thinks he would be willing to move anywhere, just to get a job in sports.  He says, “It’s funny, when I was in school, I hated English, but loved geography and history.  Now I may be a sports writer!”

Andrew’s advice to other kids with hemophilia is, “Don’t put yourself in a box that says, “I am a Hemophiliac!” It does make you unique, but you just have different challenges.  Embrace it, but don’t let it change who you are.  And Andrew’s advice about going to college: “Choose a major that you’re interested in, or really like.  College will provide some of the best experiences of your life…learn as much as possible and get involved at your school.  Everyone in college wants to meet new people and learn about different cultures, so jump in and embrace it!  The more learning and growing you do during your college years the more likely you will be to find the job you really want!”  That sounds like good advice from a twenty-something who has it all together and will soon be reporting from the world of sports.

On November 11, 2005 my 11 month old son was diagnosed with severe Hemophilia A. We began infusing him with factor VIII for bleeds. Within 4 months, we began to notice the factor was not healing him as quickly. It was around then that we found out about his inhibitor. After lengthy discussion with his doctors we made the decision to try to fight it off. Jeryn was so young that his best option was to place a port-a-cath in his chest for the daily infusions. He was to be given a very large dose of factor VIII every day, aka Immune Tolerance Induction, for as long as it took.

At this point, all we could do was be afraid for our son. We had, within a six month period, found out our son had a bleeding disorder, the medicine to control the bleeds did not work, and he would have to have surgery if he was to have any chance of beating it. Every doctor will assure you, and your family will console you but at the end of the day you will still be scared. That is ok, you have that right.

Over the next 3 years Jeryn would successfully fend off the inhibitor 4 times.  Each time it would come back without warning and stronger than it was previously.  It is currently August 2009 and his inhibitor level has been 0 since January.  From this point on every day brings the possibility that it may return but also the hope that it will not.

It is important to note that our doctor is one of the best in the world and he told us that if we did not beat it within 18 months the chances we would beat it at all were very low.  Forty-four months later my son is still fighting and still winning small battles.  Throughout this ordeal my wife and I have learned many valuable lessons, the most important being never give up, never quit!

In the beginning you will feel confused, scared, and fearful that you can’t handle having this placed in your hands.  The Bible says that God will never put more on you than you can handle.  You will learn that you have more nerve, ambition, and heart than you ever knew you had.  While it is truly sad that a child must bear this disorder, in the long run, he will be a better, stronger person for it.

Kelsey truly is a gift from God

Article Update – since this article was originally written Patti Matthews has developed a separate blog site for Kelsey which you can visit at www.theupfamily.blogspot.com . Here you can get daily updates on Kelsey’s progress.

I wanted to write an article about the unexpected coming of our new little baby and how surprises come in all types of packages.  My wife was expecting Kelsey October 3^rd, but after going to her normal doctor visit last week, the doctors did not like what they saw.  To make a long story short in about two hours I was looking over the blue sheet in the operating room with the doctor saying, “Andy, do you want to see your new baby?”  I looked and saw the most beautiful baby girl in the world!  In fact my wife said my first words when I first saw her were, “she’s so beautiful”.

Mom and Dad with Kelsey

That joyous feeling would only last a short time.  I went down to check on her in the nursery later, and you should have seen all the nurses and doctors working on her.  She went from a cute little four pound baby to a little baby strapped to a board with I V’s in every place you could think of.  It was almost like she had hemophilia because she was bleeding into her stomach and they were giving her fresh frozen plasma and her liver was enlarged.  It seemed as if she had similar problems to everything I had having hemophilia.  I was convinced she was a symptomatic carrier, but finally it was proven that she was not, when the bleeding stopped.  The doctor came into our room later and it was almost like an episode of “House” because they were listing all the problems they knew she had, but did not know why any of these things were happening.  It scared us to death!  Then the big news came the next day when they told us what we thought, at the time, was the worst news we could have imagined, “Your baby has Down Syndrome.”  I said, “What, there must be a mistake!” as we were looking at our baby and the doctor in the NICU.  I thought about all of the parents of newborns diagnosed with hemophilia and how they must feel, not knowing themselves much about hemophilia at the time.

For the first hour it felt like someone had just died.  “Did you hear about baby Kelsey?” And, “Oh, I am sorry, that is just terrible!” Then the phone started ringing off the hook and people started coming to see us, but it was not until this angel of a doctor came to see us that afternoon that we felt an unreal sense of relief and peace come over us.  She told us, “Your baby does not have any heart problems which a lot of what I call ‘Up’ babies suffer from.” She went on to say, “Don’t let this diagnosis get you down because ‘Up’ babies are beautiful little kids.”  She then said that she could ask every Down Syndrome family she knows, and they would tell us that having their child was the best thing that had ever happened to them.  It completely changed the way we looked at our situation.  We then started to look at Kelsey as a precious gift from God and “God does not make junk!”  There must be a reason why he gave us this child.

I know this is long, but I  want to make a very important point.  In my speaking engagements, I always say to people, “You should think of your Hemophilia as a gift – all of the challenges hemophilia brings that you are able to overcome actually adds fulfillment to your life.” I believe this with all of my heart.  Now am I being tested because I need to say that our little sweet baby that has Down “Up” Syndrome is a gift?  Well,  it is amazing what God can do, and after talking to many parents of Up kids that were not sad at all but actually said this was one of the best things that had ever happened to them, I began to look at it as a gift.  Like I have always said, you cannot change your circumstances, but only the way you look at them and we now are so excited about our little gift, Kelsey.  Again, because of all that we have been through with my hemophilia – all the challenges that it brings – I feel like we are just a few steps ahead of other parents even though we are neophytes in the Down’s community.

Reaching out to our little "UP" baby Kelsey

Don’t feel sorry for us but rejoice with us!  I am so excited about all of the people in the “Up” community that I can encourage in the future and how I can use this story to maybe get people to look at having hemophilia differently and that hemophilia is not so bad.  I hope one day you will be able to meet Kelsey, because I bet she will bring a smile to your face and really show you that it’s the little things in Life that make a difference!

POSTED BY ANDY

Kelsey Matthews arrives!

Our Sweetaffliction.com co-founder Andy Matthews and his wife Patti had a big surprise on Tuesday August 4, 2008. To everyone’s surprise their new baby Kelsey decided to make her appearance at 12:20 pm. She weighed 3 pounds 12 ounces and is 15 inches long!

Patti went in for a normal sonogram that morning and the doctor did not like something about it. After some monitoring it was determined that something was abnormal with the uterus causing Kelsey’s heart rate to drop occasionally. They decided to do an emergency C Section at 32 weeks and literally, just a couple of hours later, Andy and Patti had a brand new baby girl!

Patti is resting and hanging in there despite everything. Kelsey is having some complications as many premature babies tend to have but is a strong, spunky fighter and we all know that God will be watching over her. Please pray for Kelsey and  The Matthews family as they struggle to navigate through this stressful time while both Kelsey and Patti recover.

POSTED BY DAVID

Hemophilia shots don't "suck" for brave Jakob Watt

At my speaking engagements, I always mention that if you can deal with hemophilia, then you can deal with anything life throws at you. Kids need to be proud of their hemophilia and learn to tell their friends about it in a positive way. I also believe  that by being brave enough to infuse themselves with a needle – something most kids without hemophilia could never imagine doing, kids with hemophilia will be stronger and their friends will look up to them. This article is written by a mother of a young son about some of her ways to make giving infusions more of a treat and less of a tragedy. I will add that one of the highlights when I was growing up was getting back from the hospital and having my dad take me to  Dairy Queen for a Dairy Queen Dilly bar…That was a great time for me as a youngster!  Andy

Lacy Watt ( mother of Jakob Watt) writes:

Jake, a severe factor 8 Hemophliac, has always been an active bundle of joy to our family. At the age of 2 he experienced his first joint bleed in his ankle. It was a spontaneous bleed that occurred in his sleep. Anytime as a Hemophlia parent you awake to your child not being able to walk is overwhelming. We immediately went to our pediatrician who administered his factor. Our HTC was almost 2 hours away at the time.

Within a month our HTC decided is was best to have a port put in. I was a stay at home mom and my husband worked close to our home. We had a routine for our prophalaxis treatments. My husband would take an early lunch break three times a week and we would take turns doing his medicine. One would access the port while the other parent held down his arms to keep him from wiggling everywhere. We felt almost inhumane about holding our son down. We wanted our son’s Hemphilia to be a positive experience and something he did not grow up to resent.

So after lots of thought I came up with an idea. After every doctor’s visit he got a Dum-dum sucker from the doctor. This was a big treat for him. I do not keep alot of candy in the house. He seemed content after he got his sucker, then the idea hit. When we would begin to access the port we would give him a sucker. It was small enough that he didn’t drool everywhere and after accessing the port he was almost done with his sucker.It finally got to the point that I no longer needed my husband there to help me. I was able to access the port and handle infusions by myself.

After a year of doing this remarkably we started cutting back on the suckers and he stayed still during his infusions. Through communication and a positive attitude we have been able to transition to veins with him sitting still. We still occassionally use suckers during infusions. We have done this for 6 years and still NO cavities. We infuse in the morning so he just brushes his teeth afterwards

I had my knee replacement over 10 years ago at the age of 32 – one year after getting married. I found myself waking up in the middle of the night with my left knee literally locked up and in severe pain. Unable to straighten the knee out without experiencing agonizing discomfort, I would have to gently move the knee around in different positions until the bones would disconnect from each other.

When you have a bone on bone situation in a knee joint, all kinds of hell can break lose. For some reason my hell always happened at night. However, for the most part during the day I was still able to get around relatively pain free. Most importantly I still had around 110 degrees range of motion. Just enough to sit comfortably in a sports arena, go on a roller coaster, and ride a bike – a form of physical fitness that I could still enjoy despite my pain.

After getting x-rays the doctor proclaimed that because I basically had no cartilage, the only viable solution for me was a total knee replacement. I never got a second opinion or tried to come up with a different solution to solve the locking  problem. Nor did I attempt any kind of physical fitness for strengthening the joint. I am convinced to this day that had I gone on prophy and really worked out hard, I may have gone another several years or longer without having to do the replacement.

I had my replacement and never did experience any bleeding problems as a result of the surgery. What I did have,  and what I am warning those of you thinking of doing this procedure,  was a very conservative post-op hemophilia physical therapist.  Hemophilia nation – when you are dosed up with 100% clotting levels – enough to have your bones sawed on and leg cut completely open – the last thing you need is a hemophilia physical therapist who is treating you like you might still bleed.

I was put on a passive range of motion machine that only moved my knee several degrees slowly – instead of bending the heck out of it like most post op therapists tend to do. Nor was I put on a normal, aggressive post-op physical fitness program at home like most knee replacement patients are. My therapists and doctor all took the “let’s take it very easy and slowly with this hemophilia patient” approach.

Weeks later, I ended up with a lowly 60 degrees range of motion. 50% less than what I had going into the surgery. As a result, one month post-op I had to have a manipulation – a procedure where they give you an epidural and literally bend your knee all the way down to break apart the scar tissue.  However, by that time my knee joint had built up so much scar tissue that the damage was already done.

Today I have about 85 degrees range of motion on a good day. My leg muscles are extremely atrophied because I am unable to do much in the way of physical fitness and the scar tissue around my knee causes pain around the joint capsule and into my quad muscles including occasional bleeding and swelling in my quads.  I haven’t been able to ride a bike since the surgery and I will soon need to move into the handicap section of the arena where I watch my beloved Utah Jazz basketball games because I can no longer sit in my seat comfortably and bend my leg. Nor can I bend my knee enough to do things like ride a roller coaster. But hey, the dang thing doesn’t lock up anymore at night! You gotta love that!

So if you have hemophilia and are contemplating getting a knee replacement get a few opinions first. Wait as long as you can possibly deal with the pain comfortably. If you can afford prophy and that makes things better then by all means do prophy. Work out! Strengthen your muscles. Then once it is time for that replacement, make sure your doctor and post-op team are ready to push you as hard as they would push a normal patient. Factor up for several weeks and make sure you have a solid factor prescription/dosage schedule. Remind them to take those kid gloves off when you are doped up on factor! I’m pretty sure if you do these things then you will have a positive experience like David Simmons did and not like the ones our reader Greg and I had. These are all just personal opinions of mine and are by no means proven facts.

Written by David

Below is our first blog post from a mother – we hope you enjoy this entry about Kyle – future second baseman of the Texas Rangers!

Baseball…As American as apple pie, right?  But, until recently, most hemophiliacs were discouraged from playing the sport, told the risk outweighed any possible benefits.  Well, tell that to my seven year old son, Kyle, who despite having severe hemophilia, lives for the game of baseball.  He not only watches baseball for fun, but he analyzes every pitch, throw, and base running effort by every player.  At the age of 4, he started playing on the t-ball team, and this year, has made it up to coach-pitch.  He loves to hit, but also loves to play second base.  We have had some parents ask us about our decision to let him play baseball;  it was actually an easy decision.  Allowing him to play a team sport was important to us, and we knew football was out of the question!  As he has gotten older, he has asked us why everyone doesn’t go to school with bandaids on their hands or arms, but being a part of a baseball team allows him to be like all the other kids.  He hits, catches, and runs the bases just like everybody else.  Looking out onto the baseball diamond, you wouldn’t be able to tell which one is the hemophiliac.  Baseball has allowed him to develop his strength and coordination, but more importantly, given him the confidence to try new things, and that hemophilia is only part of his life – we are not going to let it rule his life.  He knows that in order to play baseball, we have to stay on his regular prophylaxis schedule, to prevent any possible bleeds.  He won’t be able to play pitcher, and catching would be too hard on his knees.   We are so thankful that his coaches have been so understanding of that.  They are so supportive of him. He doesn’t get any preferential treatment, or pointed out that he can’t do something.  He is just one of the boys on the team! 

When we see his face after getting an out at second base, or getting a big hit and scoring a run, we know we have made the right decision.

Kyle playing some serious second base!

The following article was written by our first guest blogger – David Simmons. It chronicles his decision on getting a knee replacement despite having severe Hemophilia. 

I had always known, following an inability to get rid of a stubborn limp after college and upon receiving several opinions from orthopedic surgeons, that I would someday require total knee replacement surgery.  My left knee had become a “bone on bone” situation after many episodes of repeated bleeding into that joint as a child.  Over time, the amount of cartilage remaining in the joint slowly diminished.  I remember one physician who took a glancing look at my x-ray and simply exclaimed, “ugh”!  Being a 34 year old severe hemophiliac, I naturally had concerns about how such an invasive procedure would affect my life, my ability to work, and to participate in activities that are important for fathers to participate in with their children.  Are the results guaranteed?  Certainly not, as with any surgery, the procedure comes with certain risks.  However, the potential benefits of the surgery, in my opinion, far outweighed any risks involved, even for a hemophiliac.

Approximately one year prior to my knee surgery, which took place in December 2008, I had contemplated the surgery but ultimately did not execute.  One of the main reasons I decided not to go forward with the surgery at that time was my physical condition.  At the time, I weighed nearly 220 pounds and generally felt tired and out of shape.  Over the next year, I committed myself to following a regular exercise regiment which I still follow today.  I never knew how much exercise can make a difference in the way you feel on a day-to-day basis.  Yes, there is one form of exercise you can perform as a severe hemophiliac with a blown knee…swimming.   As I continued swimming, I gradually benefited from more energy each day, a lower weight, and a trimmer waistline.  I felt that it was important to be in good physical condition to have the best chance for the knee replacement surgery to be a success.

Even though I knew I needed the surgery sometime in the next few years, I had no idea that the surgery would be occurring so soon.  An opportunity had emerged at work whereby the senior managing partner at the commercial real estate firm I work for would be gone for an extended period overseas.  Since I report to this partner, it was the perfect opportunity for me to work-from-home, to the extent possible, while recovering from the surgery.  I was told that it is often a six-week period that patients are not able to return to work.  The idea was met positively at work, so I decided to go ahead with the surgery; however, getting on a surgeon’s schedule on short notice at the end of the year is easier said than accomplished.  Many patients choose to have surgery over the Christmas holidays because they have extended vacation time and also want to get the surgery done prior to the end of the year to avoid paying the full amount for deductibles and co-pays in connection with their health insurance policies. I had to beg and plead with the various doctors, nurses, and rehabilitators to get everything lined up within a two-week period of time or else my window of opportunity would soon close.

With regard to the surgery experience, it was about what I expected.  I was nervous prior to the surgery, but everything went very well and the surgeon gave a good report to my wife and mother, both waiting anxiously in the waiting area.  Part of the precautions taken for any surgical procedure taken on a hemophiliac involve having clotting levels at 100% for a sustained period of time.  I was very concerned about the frequency of my infusions of Factor VIII, and was becoming aggravated with the nursing staff who didn’t completely understand how important the timing was for the infusions.  They would often show up 30 minutes to an hour after the scheduled time.  Although I’m sure an hour either way doesn’t make much difference, in my mind, I wanted everything to be right on schedule.  After all, I really needed my knee to work for me.

 Did it hurt?  Well, I was fine until the anesthetic injected into the knee during surgery wore off.  It was Christmas day and my wife and children were there with me, in the hospital room, opening presents.  I remember how difficult it was to tolerate the pain in my knee while trying to hide may pain from my children in an effort to keep the focus on them.  After a narcotic mix finally arrived, I had some relief.  The difficult part of the pain experience persisted for about a week after surgery.  It was difficult to be totally comfortable and physical therapists always expected more that you could deliver.  However, the paid did subside a bit, and I did slowly begin to gain more range of motion in my knee.  After a 4 day hospital stay, I went home.

My rehabilitation at home involved an in-home visit from a physical therapist a couple of times per week followed by outpatient physical therapy sessions for about two additional months.  The sessions involved low impact repetitions of muscle strengthening exercises followed by stretching.  The stretching exercises were sometimes painful, because the therapist would often need to “break through” a point in the range of motion where I had difficulty meeting the goals.  For the first few weeks, I used a walker to get around the house.  After a while, I ditched the walker for a cane.  Finally, I ditched the cane.

Now, my knee freely swings through a normal walking stride without pain.  Although my muscles surrounding my knee are still much smaller than the muscles surrounding the other knee, they will eventually gain mass and strength.  Whatever limp I once had is now severely diminished.  The pain I once experienced in my knee on a daily basis and at night when I would sleep is now gone.  I am now able to walk longer distances, stand on my feet longer, climb stairs, play low-impact sports and other activities I could not perform prior to the surgery.  Although the prosthetics will always need to be reevaluated by x-ray and precautions taken to avoid any infection around the knee, I feel that the absence of the daily pain that I once had and my increased physical ability far justify any issues that I may have to deal with concerning the prosthetics.  Overall, I am very happy with the outcome and would make the same decision were I to have the choice again. 

Written By David Simmons

Why I am so passionate about giving back to hemophilia worldwide……..And why you should be too!

At age 42, with all the problems that come with hemophilia, I still think having hemophilia was the greatest gift I was ever given. It’s taught me that I cannot change the lot I was dealt, but I can choose how I live my life. And when I recently realized how the other half of the world lives with hemophilia – without medication, in poverty – it hit me one day; I want to help people in general to improve their outlook on hemophilia. And I want to encourage everyone to give back to those around the world who are not as fortunate. 

My epiphany

It all started about seven years ago while I was on the internet, participating in an online support group. One day a young man emailed the news group to request help finding factor, the medication used to clot blood. His name was Lucian, age 21, from Romania. When I contacted him directly, I learned he had no access to clotting factor. He could not even get Cryoprecipitate – the treatment I used for my first 18 years. I started an email friendship with him and it has spun into one of the deepest friendships I have, without us ever having met face to face. 

Lucian Uritescu with his painting

While I was able to live an active life in the US, Lucian’s life was a struggle. On prophylaxis, I worked out with weights, and participated in mountain biking. Lucian, without reliable access to treatment, does not participate in any physical activities for fear of bleeding. He had to quit school at age ten due to his frequent bleeding episodes. While resting in bed often, he taught himself to read, write and speak English by watching American television. Can you imagine going for days or weeks with a bad bleed, with its throbbing pain, with joints swelling like a balloon and not being able to treat it?

Then Lucian wrote in 2006 about changes in treatment protocol in Romania. Those with hemophilia would no longer be treated at an ambulatory center. All treatment, even for minor bleeding episodes, would require a two-week stay in the hospital. The challenges Lucian faces daily are mind boggling to me and yet my Romanian friend lives this way every day, just hoping he does not get another bleed. Thousands of others like him living in developing countries face the same daily challenges. I feel guilty knowing how Lucian lives, but I reconcile that by giving, in some way, to someone in a developing country who has a bleeding disorder who needs help. You could, too.  

How blessed we are

Reading about Save One Live founder Laurie Kelley’s hemophilia adventures in the poorest villages from Africa to India has helped me see how blessed we are to live in the US. Hemophilia is not that bad when you have access to factor and proper treatment.

But in the developing world, it’s another story. For example, I remember one night when I got a phone call from Lucian. He told me that he had just gotten mugged and had been hit in the head. He asked what he should do. It felt strange for him to be calling me. In the US, we would call our doctor or treatment center, or go to the emergency room. Lucian doesn’t have those kinds of options.  He asked me if he should take some of the donated factor he had on hand. I told him yes. I was not trying to play doctor but I knew his alternatives were not good. I recommended he take a larger dose than normal and to keep a close eye on his condition. I stressed he should go to the hospital if his condition got worse. He called me the next night from a pay phone at the hospital. He said he did indeed have a head bleed. Lucian was lucky; the hospital had some plasma on this occasion and he would recover. It is these kinds of events that really make me see how life is for many people with a bleeding disorder, like Lucian, in developing counties. 

Role reversal

It’s strange: Lucian usually ends up motivating me, because despite all he has to deal with, he still has a positive outlook on life. Lucian is an artist. Last Christmas he sent me a unique gift: a painting of an old man. I love helping Lucian, and expect nothing in return, but when I got that painting and saw all the things he sent my son Keeton, and me it was the best Christmas gift I got last year!

Lucian hasn’t had a formal education. He wasn’t able to attend schoold regularly due to his bleeding episodes. He is now unemployed, and lives in a small apartment with his parents and grandmother. There is little privacy. And they own very little. Days and even weeks sometimes pass before I get an email reply back from him. His Internet access for years had been through Internet cafes, which are costly. With little money, it’s a problem for Lucian. Can you just imagine life without easy access to your computer? Most of us are addicted to being online; it’s an easily taken for granted way of life. When it is your only access to the outside world, and it is limited, it must be frustrating. 

To help defray costs, we recently  began using Skype, a free telephone service provided over the Internet. We are even able to use a video link. Talk about an unreal experience, to see him and his family in a live video! I even performed a song on my harmonica, and watched their faces in surprise as I played!

To whom much is given

I have tried to live my life according to the Bible quote “To whom much is given, much is required.” I cannot tell you how it feels when I get emails from my friend thanking me for helping him; to receive his Christmas gift was wonderful. My friends who do not have hemophilia would never be able to experience that kind of appreciation. 

If you get involved with Save One Life, it too will change your life. I truly believe if my parents had been able to read Save One Life’s One Voice to me when I was a young child, it would have given me a different way to view hemophilia. Rather than feeling sorry for myself and struggling with poor self-esteem, I could have learned how others live around the world. I could better appreciate what I had. Perhaps I would have started back then helping other kids, but it’s never too late to start helping now. 

Because of  my efforts, Save One Life will enroll Lucian in their sponsorship program. If you’d like to sponsor a child with hemophilia in the developing world, contact them today! There are children waiting for a sponsor like you. Visit www.saveonelife.net for more information.

POSTED BY: ANDY