About Hemophilia...

Hemophilia is a rare genetic bleeding disorder in which the blood does not clot normally. Persons with hemophilia are missing or have a low level of a protein needed for normal blood clotting. About 18,000 people in the United States are known to have hemophilia. Hemophilia usually only occurs in males, except for rare exceptions. A person with severe hemophilia means that they have less than one percent clotting factor in their system.

Tuesday, December 14, 2010

Shattered Dreams and Broken Promises

Two years ago Amanda came into Dwight's life bringing dreams to life, laughter, and happiness. Then only after being married a year and a couple of months, Amanda decided that she didn't love Dwight anymore: a month earlier Dwight had become Case's legal guardian. Before Dwight's clothes were out of the house, Amanda started living with Case's biological father, who only claimed Case as his son after being taken to court, didn't give any child support until the state stepped in, and had very little to do with Case. A week later, Amanda filed for divorce refusing to talk to her own family or the preacher, who married and counseled them. Amanda's decision was an unsuspected devastating shock to both sides of the family. How can one person, who gave so much joy, cause so much pain ripping a family unit apart?

The week before Thanksgiving we moved our son back home with us. It was a very emotional traumatic experience. Dwight has not only lost a wife, but an adorable little boy, who called him daddy. Dwight was the only father that Case had known taking care of him 24-7 even after holding down a job.

So now our son must pick up the pieces of his life, work through the pain of broken promises and shattered dreams, and adjust to being a single adult again. Even knowing that he gave his marriage and fatherhood every bit of himself and tried his best to make it work- Amanda admitting that it wasn't anything that he had done- still doesn't prevent his self esteem from taking a bitter blow. Thankfully Dwight is surrounded by close family members on both sides and scores of friends, who are supporting him during this major transition in his life.

Monday, October 11, 2010

Hemophilia From A Toddler's View

I am Case Trenton Huddleston and lots of things have happened already in my life. My parents celebrated their first anniversary a couple of months ago and I turned two years old. I am a big boy and can things all by myself. In fact I am quite independent.

My mommy works fulltime at Walgreen's and goes to school. My daddy got a job as a janitor at the school where in a few more years I will attend, so now a couple days each week I go to the day care and play with the other kids.

Having a dad that has hemophilia isn't that much different from anyone else's dad. My daddy got a shoulder bleed one time from carrying me around so much, but he still is big and strong enough to carry me when I get tired.
I quickly learned that I'm not supposed jump on my daddy's ankles as sometimes he has bleeds in them and I have to be careful, but otherwise we wrestle around and play together every day.
I love dogs and have a puppy of my own. Here I am petting my daddy's dog when he was a boy and lived at Grandma and Papa Walker's house. Sandy is a real old dog.

Friday, June 11, 2010

A Wife's Perspective of Living With Hemophilia

When Amanda Rose married our son, Dwight, she entered the world of living with a person, who has a chronic bleeding disorder. Her life will never be the same again. Already working in the medical field, Amanda was curious about hemophilia when she first met Dwight. She asked numerous questions and researched hemophilia to find out how it affects a person. Before they were even engaged, Amanda and Dwight talked daily working through issues that might affect them after being married and went to marriage counseling. Today Amanda works fulltime as a pharmaceutical technician at Walgreens and goes to nursing school. Now that she is married her biggest challenge is managing time for her son and husband between work and school.

Since Dwight is unable to work fulltime, Amanda has the responsibility of providing the main income. She quickly learned firsthand the frustration of state insurance with all its paperwork and limitations of income that doesn’t allow a person to better themselves financially. Thankfully, Amanda has great insurance at Walgreen’s that also covers Dwight. While they don’t have to worry about insurance coverage at this point, Amanda is keeping herself informed concerning the future as adequate insurance coverage will always be of major importance.

Amanda is quickly learning to identify the signs of bleeding episodes- like limping for Dwight’s chronic ankle bleeds or crankiness as a sign of pain- and has to take the initiative asking Dwight if he is having a bleed as Dwight tends to hide bleeding episodes or downplay them. A big frustration is worrying about Dwight factoring himself regularly like he should in order to avoid bleeds. When Dwight woke up with a hip bleed one morning, Amanda was suddenly faced with the added stress of trying to call in and see if she could get the day off and/or work out a babysitter for Case. Thankfully after a couple of days, Dwight was back on his feet again. Dwight’s arthritis is another main issue that Amanda is concerned about. Keeping informed and Dwight mobile is a big priority.

Her advice to other girls considering marrying or someone living with hemophilia is to give unconditional acceptance. Keep communication open by making sure that the other person doesn’t hide his feelings from you and work through any disagreements. Living with a person who has hemophilia is quite challenging compared to someone without any medical history. If anyone can meet the challenge it is Amanda Rose. With her caring personality that will make her a fantastic hospice nurse she also is the perfect marriage partner for Dwight. We are so proud of you, Amanda. You are the best thing that ever happened to our son!

Saturday, April 10, 2010

Today Dwight faces the transition from a single guy to becoming a responsible father and housekeeper in his new role of married life. Going from an independent young adult, whose main concern was himself he now must keep up with a very active toddler, who is perpetual motion every second that he is awake. Dwight lives in the world of motherhood 24-7 filled with fussy days, happy moments, temper tantrums, the continuous schedule of feeding, naps, and changing stinky diapers, interpreting babbling sounds into words, and seeing firsthand the subtle changes from babyhood to a little boy each week. So far Dwight has survived an arm bleed, hip bleed, and numerous small bleeds while taking care of his little boy with the satisfaction of knowing that Case has been a lot healthier this winter due to his attentive care. Instead of jumping in his truck and taking off at a moment’s notice, Dwight now has to plan ahead stocking a diaper bag with plenty of pampers, juice, snacks, and an emergency outfit, make sure that Case is dressed, load up the car, fasten a wiggly little boy into his car seat, and then head out.

The major U-turn of Dwight’s married life was changing from having a messy bedroom- that always was the bane of my existence- to juggling the fulltime job of housekeeping. Dwight’s one stint of keeping house for a year while we were gone was to wait until there weren’t any more dishes or silverware before washing them, wash his clothes only when there was nothing else to wear, and quickly sweep the house when he knew that I was coming home. Dwight soon learned that no matter how clean or tidy you make a house you have to turn around and do the very same tasks the next week. From throwing things down and letting stuff sit anywhere and everywhere in his bedroom at home, Dwight now has the chore of picking up and putting away items that seem to multiply each day. Life with a toddler equals clutter as Case’s one joy is dumping out the entire toy box every time it is filled back up. A working mother and a toddler quickly builds up a mountain of wash every couple of days not to mention dishes piling up in the sink. Dwight has discovered the one major rule of housekeeping that dirty clothes and dishes are a never ending chore. Where most married girls start out slowly by learning to maintain a regular schedule of meals and housecleaning with two adults, Dwight has plunged into the world of housework with two adults and an active toddler to boot.

Needless to say there isn’t a dull moment in Dwight’s life now-a-days. No matter how frustrating or exhausting life with a toddler can get all Dwight has to do is look into blue eyes of a little boy, who already imitates his every move and calls him daddy, to realize that every stinky diaper is well worth the effort of raising a son. And despite the successes and failures of maintaining a household throughout the day, Dwight is there each evening to welcome home his wife after a long day of work and schooling. Way to go, Dwight! We’re proud of you and how you have adapted to the world of being a househusband.

Friday, March 5, 2010

March Hemophilia Awareness Month!

March is Hemophilia Awareness month! Very fitting considering that Dwight was born in March himself, uh… on the thirteenth no less in the early 1980’s. Just as Dwight totally changed our life, hemophilia was entering the AIDS era due to contaminated factor given to clot the blood that would ultimately kill the grandfather Dwight inherited his severe hemophilia from, his grandmother, and thousands of other innocent lives.

During Dwight’s beginning years as we learned to cope with distinguishing internal bleeds we also were caught in the middle between the government refusing to pay for the more expensive heat-treated factor and our hematologist that realized early on- even though the drug companies kept everything hushed up and lied to us customers- the regular factor was contaminated so he wouldn’t prescribe nothing but heat-treated. Dr. Hanna literally saved our son’s life. We will forever be grateful to him.

Medical advancement also exploded as the powdered factor was able to be almost instantly dissolved when sterile water was added instead of having to shake the mixed factor for thirty minutes, then upgraded where the factor no longer had to be store in the refrigerator enabling me to reclaim an entire shelf in my refrigerator that once was used to store factor, to now prophylactic treatment where Dwight infuses himself three times a week keeping a low level of factor in his system instead of having to wait until a bleed starts before factoring. This avoids the long painful bleeds of childhood even though Dwight continues to average two to three internal bleeds a week.

Thursday, February 18, 2010

Our son's wedding!

Last summer was an exciting time for our family when on August 22nd our son; Dwight Eugene Walker married Amanda Rose Huddleston. Dwight started going with Amanda Rose, a single mother who worked at Walgreens as a pharmacy technician the previous December.

As soon as Dwight met Case there was an instant connection for this fatherless little boy. This loveable active toddler, who looks just like his mother, quickly found a place in our hearts as well. To Case, Dwight is "daddy".

Everyone that sees Dwight and Amanda together thinks they make the perfect couple. When the preacher announced Mr. & Mrs. Dwight Walker the entire congregation stood and gave them a standing ovation as they walked down the aisle while a rainbow arched high overhead outside the church where their vows were said.

For Dwight his wedding day was a dream come true- something that he honestly doubted would ever come to pass having severe hemophilia and knowing that he would physically be unable to support a wife or family. On Amanda's end she prayed for a Christian husband, who would love her son. Amanda and Dwight's wedding was an answer to many prayers. Even though Dwight and Amanda face the challenge of turning a single parent home into a family and coping with a major disability they are a perfect match. While Amanda works fulltime and goes to nursing school, Dwight stays home as a housewife taking care of Case.