Rare Disease Day

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Today is Rare Disease Day. As many of you know, my daughter, Taylor, has a rare genetic metabolic disorder, MPS. Her subtype is known as Sanfilippo Syndrome. Her disease is neurologically degenerative and the average lifespan for her type of MPS is 10-15 years. Taylor is 17 and God has graciously blessed us all with her health. While we have our ups and downs, each day we live is by faith, trusting God’s plan for our lives on a daily basis.

For more information on MPS, check out the MPS Society website and for more information on Rare Disease Day, check out www.GlobalGenes.org.

I hope you’ll wear jeans in her honor today. And if you think of it, purple is the MPS color, as well as Taylor’s favorite color.

Have a fantastic Friday!

Rachel

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19 Comments

  1. Thanks Rachel for sharing this about your precious daughter. Wearing my jeans today, and saying a prayer for your family. I have purple shoes on and the bows of my eyeglasses are purple. 🙂

  2. Good morning Rachel! Read your post on Friday! We also acknowledged Rare Disease Day at our School! We have 3 students now that have rare diseases, including my grandson Andrew. We put it up on the big board! And yes we all wore our jeans! Every day is a gift for each one of us but I thank God for the special gifts of days with us for our children! Andrew is well and back to school. I am remembering Jayla and Eddie! Their love lives on in my heart! Taylor is always in my prayers as well as your family! My heart is thankful for every day we all have together…God bless!

  3. Jennifer Robinson says:

    Thank you for posting this about Rare disease day. My father died of as very rare brain disease 4 years ago. I would love to order some of the ribbons. Could you post a direct link to order those?

  4. Thank you so much, Rachel for this post on Rare Disease Day. I will be following up to find out more because my sister has a rare form of rheumatoid arthritis called Stills. It has taken a vibrant 50 something woman & put her in a wheel chair fighting for every breath in just a few years. Even medical people are largely unaware of this zapping, draining, painful disease. Your daughter is lovely and she & my sister share something else… Purple as a favorite color.

  5. Susanne Johnson says:

    Rachel,

    God certainly holds Taylor, and your entire family, closes to his heart.

    I am pretty new to Christianity and while I am getting familiar with scripture I cannot quote directly… But I truly feel that, as it is written, God surely has great plans for your beloved daughter in his Kingdom.

    God bless you all! You certainly do his good works on this earth and I thank you for all that you have shared and inspired me with in the past several months.

    This morning I have a meeting which jeans will not work for…. As soon as I am done it will be blue jeans and purple (my favorite color too)!

    Susanne

  6. I’m finding in life when I am weak he is STRONG . When there is NO WAY then GOD

  7. Blessings to you and your family today. Thank you for all you do. Thank you for sharing.
    Joyce

  8. My daughter and I both are wearing purple with jeans today in honor of Taylor…

  9. Bless you all. I think of and pray you often. Love your writngs, they are very uplifting!
    Lots of hugs to you ,Jazmin from Sweden

  10. Good morning Rachel. Praise God for his daily miracles. May you and your family be blessed over and over again with a miracle of healing. He has a plan in all of this–we know. I know he has blessed me with you and your wonderful heartfelt posts. I pray that Taylor doesn’t have any pain. It’s funny that you mentioned purple, I have my outfit picked out for the day sitting in the bathroom for after my shower and guess what color it is, lol, yes it is purple–so yes, I’m supporting Rare Disease Day in honor of your beautiful daughter, Taylor.

  11. What a beautiful young lady Taylor is! God has blessed your family by letting her beat the odds of this disease. My prayer is that Taylor will be able to live a long and happy life. She has God and a wonderful family supporting her all the way!

  12. Blessings and hugs through the screen for you and Taylor.

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