Causes Close to Our Hearts, Galactosemia Foundation

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I guess it is my turn to share my story and the cause so close to my heart.   I want to thank Amy for leading the charge and Christy for sharing her amazing story and cause.   I wish I could say that the words are freely flowing right now, but this is really difficult for me.  I think any time you have to open up about something personal and raw, it just makes your heart swell a bit.  My heart is overflowing this morning but I am grateful for this opportunity to share our story.

Our story begins 7 years ago with the birth of our first son.  He entered this world with his eyes wide open and I will never forget that moment.  In return he has opened our eyes to so much more in this world than I could have ever imagined. I am so grateful for his sweet soul, strong personality and for his courageous heart.

My Sweet Son, Gavin!

Gavin appeared normal as he had 10 fingers, 10 toes and did everything a newborn baby should do.  Thom and I were first-time parents and just enjoying the overwhelming experiences that come along with a new baby.  Once released from the hospital we headed home, where my mom was there to greet us.   It was a warm April day, and I remember sitting outside and marveling over our new baby boy.  It was a perfect moment!

I was one of those stubborn new moms that had to do everything myself.  I would–of course–breastfeed my baby (NO bottle feeding or pacifiers allowed!), I would change every diaper, and I would power through those tired moments like a champ.  Well, on Day 4 everything hit me and I needed to crash.  Thank goodness my mom was there, as she forced me to lie down and get some rest.  (Moms know best even when you don’t want to listen!)  It was the first day I had been able to sleep, that amazing hard sleep that your body just falls into.  Unfortunately it was short-lived as within an hour, we received a phone call from an amazing doctor at the University of Virginia (UVA) Medical Center.

That doctor who called is the Program Director for the Division of Pediatric Genetics at UVA Medical Center, and he is also considered Gavin’s Guardian Angel.  He was unable to contact anyone under our current health care so he had to call me at home.  Waking up to this phone call was scary, surreal and confusing.  He told me that my son tested positive for Galactosemia and we needed to take him to the hospital immediately.  He urged us not to do any research on the internet as it could be overwhelming but informed me that I needed to stop breastfeeding my son.  As you can imagine my world slowly began to crumble.  What is Galactosemia?  I had never heard of it before and why would he urge me to stop breastfeeding my baby–the best thing you can give your child?

As we began packing everything up,  I told my mom to go on my computer and look it up as I needed to know what we were in for.  Our sweet baby boy had tested positive for a very rare metabolic disorder where his body could not break down milk sugar.  For the past four days I had been poisoning my newborn son with my breast milk.  His body was slowly shutting down.

When we arrived to the hospital, they immediately put him under the bili-light; his liver was swollen and he was jaundiced.  His labs were off the chart and he had turned orange by this point.  He was lethargic, wasn’t eating, and slept most of the day.   Things were very stressful and we prayed that everything would be okay.  The hospital was amazing and as the days passed, our son began to respond to a soy-based diet.  He was out of the woods and Gavin was released to come home.

Seeing your child sick and helpless in the hospital is overwhelming and life-changing.  You see how fragile life can be and how one decision can change your life as well as your child’s life.  I had no idea that Thom and I could be carriers for this rare disorder.  No one else in our family had ever had this happen and the chances of meeting another person with this disorder is low.  Galactosemia affects only 1 in 60,000 babies born every year.

Galactosemia is rare, it is under-researched and there are complications that are just so difficult to explain and understand.  How can milk sugar affect reproduction and vision?    Unfortunately, it does affect many different organs and causes one’s body to function differently than someone without galactosemia.

Our story is a happy one as our son is doing great.  He eats a restricted diet (dairy-free), his liver is functioning normally, and his galactose levels are finally down to a reasonable range (it only took 6 years since having breast milk to get his levels down to an acceptable range!).  There are unfortunately many complications with Galactosemia that can happen over time, including: enlarged liver, kidney failure, cataracts, brain damage, and speech and learning delays.  Gavin has been free and clear of the major complications for some time now, and we pray he continues down that path.   He does struggle in school, but we are truly blessed to have amazing resources, a strong support system and terrific teachers.  Gavin is thriving!  He is learning, growing and looks and acts like a normal 7 year old boy as you can see below:).

Gavin supporting Rare Disease Day 2011 and Galactosemia Research!

Gavin has a very sweet and sensitive personality with a pure and loving heart.  He works very hard and really gives life his all. He has opened my eyes on a daily basis to God’s grace and he is such a blessing to me and our family.  Our cause is the Galactosemia Foundation and their mission is:

  • To educate, support and provide advocacy for those affected by Galactosemia.
  • To network with professionals to inspire the treatment and advanced research of Galactosemia.

Thank you for visiting us on this very special day.  Sharing our causes has been an emotional dream come true!

Thanks for stopping by~

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  1. Gavin really has the kindest, most pure heart in a little boy that i’ve ever seen… He is loving, smart, and such a joy. I still remember the first time I watched him, he told me all about what he could and couldn’t eat… So smart and brave. He definitely takes after you and Thom. 🙂 Thank you for sharing, Terry. xoxo!

  2. Christina Bartz says

    Gavin always has been and always will be one of our favorite people. 🙂 He is everything you described and more. Thank you for sharing him with so many of us.

  3. What a beautiful heartfelt post. Thank you for sharing your son and your story with us. May God continue to bless your family.

  4. Nettie Scherne says

    Dear Terry and Thom, thank you for sharing this story of your beautiful son, Gavin. He is so sweet and precious, I have always loved Gavin. Terry, you and Thom are to be commended for the wonderful job you are doing in taking care of him. May God continue to bless all of you. Love, Auntie Nettie

  5. I’m so glad you shared your story! We struggle with a rare disorder in our family as well (Marfan Syndrome), although I don’t think it’s as rare as galactosemia. Thank God for that caring physician! I love UVa–my husband went to grad school there, so we lived in Charlottesville as newlyweds. 🙂

    Glad Gavin is doing well! Bless you as you care for him!

    • Hi Richella
      Thanks so much for your comment and informing me about Marfan Syndrome. There are so many rare diseases and syndromes out there that it is always a benefit to share and spread the word. You and your family is in my thoughts and prayers.

      Sincerely, Terry

  6. Hello, thank you for sharing your story. Your Son is amazing! What a cutie! I am also Galactosemic, I am 35 with Classic G. I live outside of Toronto in Ontario Canada. I am overcome many struggles in my life with Galactosemia. Today I am an independent, healthy Adult, despite having diabetes I am doing well. I have a Son which whom I’ve conceived naturally, he is healthy and has no known health concerns.

    If you would like to talk please do not hesitate to me at [email protected]

    • Hi Stacy! Thank you so much for writing and connecting. I am currently pregnant with our third child and have taken some time off of blogging so I do apologize for the delay in my response. It is always a breath of fresh air to hear from other men and women how are living with Classic G. It is also great to hear that things are going well with you. Gavin is a tough kid and we have so much school and medical support here in VA, it is a huge blessing. The most difficult thing for me to handle (as a parent) is the unknown and how differently people with Galactosemia are effected. Thank you again for your kind words and support.
      Best Wishes- Terry

  7. Brittany Lucent says

    Hi, my 2 month old has been diagnosed with galactosemia, and we go to the metabolic doctor on Feb. 4, 2014 to find out more, any information that you share is greatly appreciated-I have so many questions! Thank you:-)

  8. Gavin is lucky he survived.

  9. Sarah tiroke says

    Hi i just wanted to comment that my daughter darcey has Classic galactosaemia. She will be 4 in November 2016 and in the U.K. Where we live they don’t heel prick for the condition, so after several doctor visits, ER visits, midwife and health visitors pleading for her to be admitted to hospital for extreme weight loss she was finally diagnosed at 18 days old. The first ER visit at 10 days she looked like one of those poor babies in Africa in the adverts. By the time they took it seriously and stopped blaming me, she was bright yellow with jaundice, sepsis, cataracts, enlarged liver, spider veins all over body, vomiting up thick clotted milk (I was Breast feeding) gallstones, dehydration, she was gravely ill. She now has learning difficulties, is still in nappies, cannot talk or understand English, she has brain damage and a tremor.
    we do have good health care over here but it isn’t right for her. Every appointment for her condition they go on and on about the cheeses she can have (in the U.K. They will allow West Country mature cheddar, Gouda, Parmesan as they’re so mature there’s no galactose).
    But it’s not the diet we struggle with its her development.
    My heart and love goes out to you and your son, I hope he continues to thrive and has a wonderful life!.
    Sarah X

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