Hope For Hemophilia
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Leaning on Faith

6/17/2020

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“Your life with Hemophilia has a purpose. You are fearfully and wonderfully made by God, who loves you. Turn your struggle into your story and use it to impact others.” -Lindy
Before becoming a mom to Lincoln, Lindy & her husband, Ben struggled to get pregnant. They were almost to the point of defeat when they received a prophetic word at church on Mother’s Day, 2014. Her pastor said to the congregation, she felt like she was talking to someone directly and that “this time next year, you will be holding a son.”  Lindy found out two months later she was pregnant, and Lincoln arrived precisely one month before Mother’s Day 2015. She knew that her son would do great things and have an amazing testimony to share because he was truly a gift from God that she had prayed for. 
When Lincoln was about 4 months old, they started noticing some abnormal bruising on his body. At first, they shrugged it off and thought he would be an easy bruiser like she was. But when the bruising increased in size and frequency, she started pressing their doctor for answers. After lots of appointments and tests without answers, they finally decided to change doctors. In December of 2015, at 8 months old, Lincoln was diagnosed with Severe Hemophilia B. A surprise diagnosis as there was no history of the disorder in her family. 
Lindy remembers that for several months following the diagnosis, she thought they’d gotten it wrong because they were dealing with none of the things she was reading about the condition. Outside of the bruising, Lincoln was a healthy and happy baby boy! The Hemophilia diagnosis came to reality when Lincoln fell at 15 months old, and they were unable to get his mouth to stop bleeding. She remembers taking him to the hospital for his first factor infusion and how scary of an experience it was for them. Then, in October 2016, at 18 months old, Lincoln developed his first joint bleed in his ankle. That’s when they began pushing for a prophylactic treatment plan but ran into several obstacles with both his HTC (Hemophilia Treatment Center) and their local hospital. For 6 weeks they were sent to the ER 8 times due to reoccurring bleeds in the ankle. By late November they were finally set up to receive weekly factor infusions at the local hospital. His prophylactic treatment was going great for about ten months. Then, in September 2017, Lincoln fell in the bathtub and hit his mouth causing a bleed in his gums. After dealing with this mouth bleed for over a week and not receiving adequate help or support from their HTC, they decided to change to a new doctor and treatment center. Their new HTC immediately made them feel like they were at home. They felt loved and truly accepted for the first time in Lincoln’s hemophilia journey. Lindy addressed some issues they had been having with Lincoln’s care with their new hematologist. She told the new doctor that Lincoln had been having more frequent breakthrough bleeding, and he explained that he believes Lincoln was under-dosed. It was agreed to change his medication to try out a longer-acting factor. Luckily, they were still going to an infusion center to receive his factor because, during the first infusion with the new medication, Lincoln experienced an allergic reaction to this new medication. This caused him to go into anaphylactic shock. His nurse, who had done his infusions for over a year, immediately knew what was happening, and Lindy accounts for her fast reaction to helping save Lincoln’s life. After the injection began, Lincoln started pointing to his tongue and coughing, and he was holding his stomach, saying it hurt. Lindy said, “something is wrong, he’s having a reaction!” His nurse immediately pulled the needle and picked Lincoln up, and they all ran across the hospital to the ER so that he could get the treatment he needed STAT. While running across the hospital, Lincoln was turning red and vomiting. Lindy remembers thinking that this was the scariest moment of her life, up to that point. There would be many more scary moments in his journey in the months to come.

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    Hope Charities is a 501c3 non profit that strives to make a difference in the lives of people who live with rare and chronic illness. We hope this blog gives you deeper thoughts and resources as you learn to navigate through life's ups and downs. 

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  • Home
  • About
    • What We Do >
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      • Patient Stories
    • Meet Our Team >
      • Board of Directors
      • Advisory Council
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      • James' Family Story
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    • Hope Merch
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  • Events
    • Prophy Conference
    • Advancing vWD Management
    • Joint Health Conference
    • HOPE Conference >
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