GLOW: Galacto Girl Style

As we approach our second GLOW: Galacto Girl Style event (virtual this year) I thought it was probably a good time to look back at last year's event. 

This year will definitely look much different since we won't be GLOWING together in person, but I'm still excited about the awareness and funds we can raise. 

So, a look back: Last year was our first year participating in GLOW -  an amazing fundraiser started by my friend Brittany in Tennessee in honor of her daughter Ansell, who has Galactosemia. Our first event was a huge success starting with two different news crews interviewing me two days before the event. We had 74 people attend the event and between the registrations and donations team GLOW: Galacto Girl Style raised over $2,000. 

Because I'm not what you would call an avid runner (okay, probably could have omitted the word "avid") - we went with a "MOVE" event. There were stations where attendees could move their bodies and their minds. Attendees played basketball, walked laps, did yoga and also colored, played board games and learned about Galactosemia. The day was so much more than I could have expected or hoped for! 

We held the event at our church, South Lansing Christian Church (and hope to gather in person there again for a future event!) The morning of the event I attended church and was so moved by one of the songs, which was so appropriate for that day and our Galactosemia story. Here is part of the Facebook post I made: 

“Great is your faithfulness...you never change, you never fail, O God.” He has been so faithful to me and our family - I may forget that sometimes or question it in moments of weakness, but it’s not that He isn’t faithful - sometimes His timeline just doesn’t match up with ours. And that’s because His plan for us, our life and our family is so much bigger than we could imagine. 

And at the end of the day, after everyone left and we had locked up, I sat in the prayer room at church and thanked God for His faithfulness, for all of you and for my husband and my girls. Navigating this medical condition was not something I could have ever imagined but I would also not change it for anything because that would mean changing my girls and I would never want that. And I asked him for strength and wisdom to keep being the mom my girls need me to be, even when I’m not feeling particularly strong. I know He will continue to be faithful. We are blessed.

GLOW: GALACTO GIRL STYLE 2021 - register today!

So, looking forward to this year - it's not how we would prefer to have the event, but it is what makes sense as we make our way through this pandemic. We can still make memories, get some exercise and learn something new. And most importantly, we can still raise awareness and funds for our Galactosemia community. 

For those interested in joining our event, you can sign up here: https://runsignup.com/Race/Register/?raceId=68674&eventId=450216&fbclid=IwAR1nL4syGZsdTrDVlWbTQz4elaUSVY97L76MuWbx-77DtduJ5GJJnpXz4l4

Make sure to register as a virtual participant and then say yes to joining a team and join GLOW: Galacto Girl Style. You will receive a glow in the dark t-shirt and mask for every registration. The money from registration goes to benefit the Galactosemia Foundation. You must register by Feb. 10.

For the details on our specific event - check out our Facebook event: https://fb.me/e/1PD20D6P5

We will start with a Facebook Live event at 10 a.m. - after that, it's up to you, but we ask four things:

1. MOVE - Get active! Do yoga, take a walk or have a dance party - whatever sounds like fun!

2. LEARN - We will share some great new resources available and other information so you can learn more about the disease our Galacto Girls live with, every day.

3. EDUCATE - Help us spread the word about Galactosemia and why it is so important to raise funds and support research by posting information about Galactosemia and Rare Disease Day on your social media.

4. SHARE - Post a picture on social media of you/your family GLOWING on Feb. 28! Use any or all of the following hashtags: #GalactoGirls #glowforgalactosmeia #rarediseaseday

P.S. Newscasts covering our event last year available here: https://www.wlns.com/news/galactosemia-what-is-it-family-shares-story-of-daughters-rare-disease/ and https://www.wilx.com/content/news/Williamston-mom-raises-awareness-of-rare-disease-day--568350051.html

Celebrating Galacto Girl on Rare Disease Day, and Every Day

It's Rare Disease Day - the perfect time to give an update and celebrate our Galacto Girl. We had our appointment with the Metabolic specialist the beginning of November. As always, they tested her Gal1P, the amount of galactose in her blood. They want the number to be under 4. It had been under 4 for the last couple appointments so I was hopeful. This time it came back right at 4. They aren't concerned because she is doing so well and said it could have just been what her body was producing that day and not related to anything she ate. They didn't recommend a recheck so we will get it checked at her next appointment...which won't be until next fall. We only have to go back yearly now. Yay!

We also found out her Vitamin D is low. Not surprising since our strong-willed sassbox refuses to drink any kind of milk substitute (coconut milk, almond milk, soy milk...we've tried them all). The doctor prescribed chewables for her but trying to get the prescription filled has been a nightmare. Insurance wouldn't cover it because she's not over 65. Then I found out it was like $6 for the prescription so told them to order it and I would pay out of pocket. Then they couldn't find it in the amount the doctor was prescribing. After several trips and calls to the pharmacy, I finally gave up and went shopping. After trying Whole Foods I found them at GNC. Brought them home and....she hates them. GAH. I called the Metabolic clinic back and asked for drop recommendations. So, I will be ordering those  and hope they do the trick to get her Vitamin D where it needs to be. Other than that, the appointment was great. She is great. Just the same caution of "delays usually don't show up until around school age."

We often talk to FJ about being a Galacto Girl and having Galactosemia. It's a struggle to figure out how to make your two and a half year old understand that although sharing is very important - she cannot share food if someone offers it to her. I know it will be easier as she gets older but we will continue to have the conversation.

And then there are things she definitely understands...like how to turn our own words on us. So we often say "that's not safe for you" or "we have to make sure that's safe." Well a couple weeks ago miss smarty pants was eating her dinner and decided she was done. She pushed her plate away and looked at me and said, "No mama. Can't. It's not safe for me." :/ AHHHHHHH. I assured her that her mama would never give her something that wasn't not safe for her. Oh boy...we're in for it.

In other news - Francesca will be having tubes put in her ears next Wednesday, March 8. In the last year she has had a couple double ear infections and several single ear infections. At a recheck for the last one the doctor found that although the infection was cleared up there was still fluid in her ears. We went back two weeks later and it was the same, so they sent us to a specialist. They said her hearing is probably impacted to some degree, so hopefully the tubes will help. I know it's a simple procedure but am still anxious, of course. Prayers are appreciated!

She is a rare kid - in more ways than one (I mean, have you met her parents? Especially her dad...) but I wouldn't change her for the world. She is by far the best thing I have ever done.