Monday, September 15, 2014

Walking for our Nephew



This past weekend, we attended a Hemophilia Walk in honor of our almost-two-year-old nephew who is a hemophiliac. It was a chilly Saturday...but we all dressed appropriately! 


There was a Sheetz truck there giving (yes, giving..not selling) out coffee and smoothies! (I sure wanted a smoothie-but unfortunately, those are chock full of sugar so they are a big no-no for this gal!)...


Some of our group...


Chris with our niece and Eli...


After the walk, they let all children have free shaved ice! All the sponsors were handing things out for free! It was amazing to see the support there!


I believe over $30,000+ was raised altogether to help in hemophilia research...which is now something very near and dear to our hearts as we hope something can be done to completely fix it one day...for this little guy we love and all the others who are living with it....


For those who are not aware of hemophilia...it is a genetic disorder where the blood fails to clot normally. It can be quite a scary thing...comfort lies in knowing that our God is sovereign though! Thankfully, although our nephew's more on the extreme side of it, they can give hemophiliacs 'factor' which helps their blood to clot...my sister-in-love and brother-in-love are becoming experts in it all...and we all are learning as they teach us so we can all be properly prepared if anything is necessary while caring for our sweet Eli. You can read more about it HERE if you are interested.

We were thankful to help raise money and awareness for this disorder and support our nephew and his parents! Do you have anyone in your life or family who has this genetic disorder? What has been your experience?

Thanks so much for sharing in this special time with us!
I pray your week is going well!
Warmly,
Katy

7 comments:

  1. Katy, thank you for sharing this about your sweet little nephew. He has such a pleasant smile...his entire little face lights up. Love the sparkle in his eyes.

    I was not aware of this genetic disorder until reading here. It is wonderful that the community was so supportive of this fund raiser and actually gave things away rather than charging for them!

    Have a wonderful remainder of the week, Katy!

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  2. What a great event to support.

    Sandy

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  3. What a wonderful way to support your family!! My son has more than one genetic disorder & also is deaf in his right ear & has Mild Autism!! God & family support is what gets us through the day! I also homeschool:) Blessings to you & your Family!

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  4. What a cutie pie! looks like a great turnout despite the cooler, drizzly (maybe?) weather. God bless!

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  5. Hello, my name is Kay and I live in England. My husband has haemophilia and since we only married six years ago, it's been quite a steep learning curve for me. Alan is 61 and has had mild haemophilia all his life until six months ago when he became a severe haemophiliac. Because of an inhibitor, Factor viii is now useless for him, he needs Factor vii instead which costs £10,500 for each injection! So far he's had over £300,000 worth of treatment this year. Thank God for our National Health Service! We have to trust God completely because Alan has now developed prostate cancer and cannot have a biopsy. We spend a lot of time in the Haematology Clinic and also in the Emergency Department. But overarching all of this is our strong belief that God is good.
    By the way, I love your blog!

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    Replies
    1. Oh Kay! I am so sorry your husband has to have such extensive treatment! I will pray for him *and you*. xoxo

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I am always so grateful to read your comments! I thank you for the time you took to visit and share your thoughts with me. :o)
May you enter as a stranger and leave as a friend!
Warmly, Katy