For Charlotte, With Love: Our journey with Shprintzen-Goldberg Syndrome

11/05/2025

Today the universe reminded me that your story matters and you still live in so many people’s hearts. A memory popped up that pulled at my heart strings harder today. The kind of morning that had me reflecting on how much has changed in my life since you left almost 4 years ago.

I wrote on my personal page “ This feels like a lifetime ago and yet reading this today makes my heart weep like it was just yesterday. We lost Charlotte unexpectedly roughly 3 months after I posted this. The older kids remember less and less of our life with her with each passing year, they were so very little, but I often still see the little lessons they learned from being her sibling. It almost feels wrong to say I wish she was still here because I know how many challenges her body was facing, but I just miss her extra today, the oddly calm she brought me in life even during the most chaotic times. Miss you our sweet girl.”

This was after reading a memory from 4 years ago (photo below).

My day was followed with errands to the department store where a wonderfully brave woman stopped me and ask “are you Charlotte’s mom?” We had never met, but had some mutual friends and have both faced losing a young child. Our conversation was brief, but her sweet words meant the world to me “Charlotte has been on my mind”. My family and friends remind me how often they think of Charlotte too. And though my posting here happens so rarely now I write all this for maybe no one reason at all besides to say the universe needed to remind me that our time here on earth matters, the people you choose to keep close and let in will always be there when the world seems to be a darker place.

Transitioning, we recently moved to our forever home. One that Charlotte had actually been to before as we purchased from family. My husband said it pretty well, stating it was hard to leave the house we bought for Charlotte, the house that got us closer to family, that we made work for her needs, but it feels comforting knowing she’s been in our new house before and we made memories with her here too. So this is my yearly message to say, we are still here, still grieving in waves, but always so grateful for the time we had with Charlotte. Thank you for continuing to love our sweet girl. - With Love, The Patt Family

11/24/2024

Happy Holidays, With Love, The Patts ♥️

This post felt needed as a reminder, it’s ok to still grieve your loved ones even as the seasons change and life around you speeds ahead. Your love for them never ends 🌈 A few months ago, we finally watched Moana again as a family, Charlotte’s favorite. Yes this damn near took me 3 years to do. Our youngest was interested and with Moana 2 coming to theaters we wanted to show her. Ofcourse, she loved it, especially Maui, also Charlotte’s favorite. And it did feel good to watch to again, knowing how much of a comfort it was for Charlotte. My husband went and found Charlotte’s Moana doll from her storage bin and gifted it to our three year old, who has only a handful of memories that live as pictures and stories we share of her sister. She tells us often how much she misses Charlotte and the grief that tumbles off her little heart is almost more than I can bear at times, something I never quite expected… We have tickets to go see the new movie in a week and there’s no doubt there will be smiles and laughs and likely a few tears. 🥲 We miss you sweet girl, it’s hard not to wonder what life might be like if you were still here. You will always have a place in our hearts and minds.
To quote another favorite of Charlotte’s I’ll end this post with the lyrics of a song from the movie Coco. Remember to be kind especially over the holiday season, you never know what someone else may be going through ♥️

“Remember me, though I have to say goodbye
Remember me, don't let it make you cry
For even if I'm far away, I hold you in my heart
I sing a secret song to you each night we are apart
Remember me, though I have to travel far
Remember me each time you hear a sad guitar
Know that I'm with you the only way that I can be
Until you're in my arms again, remember me”

10/08/2024

02/29/2024

Happy heavenly Birthday Charlotte ♥️♥️♥️♥️♥️♥️♥️

11/24/2023

We hope everyone had a nice Thanksgiving! We are thankful for organizations that help kids of varying abilities feel included so today we are making a holiday donation to Santa's Little Hackers in memorial of Charlotte ♥️

Have a wonderful holiday season 🎄 Love, the Patt family

https://www.santaslittlehackers.com/donations

09/26/2023

Sometimes one simple picture reminds you of how much time has passed and can trigger relentless tears. Today is one of those days where the wave of grief comes and it comes hard. So we cry and we doodle and we cry some more. Our days might look different now, but you are always in our hearts Charlotte ♥️

05/20/2023

Charlotte’s memorial flowers this year ♥️

05/08/2023

We could not have made this donation without all the love and support we were given with Charlotte. Although this project may not directly impact your community we would love if you could share the post in memory of Charlotte! Her happy face needs to flood the internet with this message for equal play today ♥️

Love - The Patt Family 💜💜💜

03/28/2023

Sharing because these inclusion shirts are amazing! You can get it without the website on the shirt too ❤️🧡💛💚💙💜

🚨AtTeNtIoN🚨 another great fundraising opportunity! Simply purchase a custom designed tee and part of the proceeds will be donated back to the project! Many great styles and colors to choose from!

https://nine20designs.com/Vendor/play4allfdl/?v=7516fd43adaa&mibextid=ncKXMA

**Please like AND share this post**

02/28/2023

Today would be your 6th birthday, the second one in heaven, Missing you our sweet girl ♥️It is also Rare Disease Day and we celebrate all that you overcame during your time on earth with us and all that your life taught us. We send our love out to our “SGS family” a syndrome diagnosed/affecting roughly less than 100 people worldwide:
https://rarediseases.org/rare-diseases/shprintzen-goldberg-syndrome/)

Today we are making two very special donations in your honor. The first is to your elementary school PTO organization. They have a huge goal of building a new playground for the school/community, a playground you could have played on with your siblings & classmates: Play4All FdL
https://www.play4allfdl.com

The other is an organization that donates modified toys at Christmas time to those who use a switch activator: Santa's Little Hackers
https://www.santaslittlehackers.com

✨ If you are feeling in the giving spirit and want to make a donation in honor of Charlotte or another loved one, here are direct links to these 2 organizations ✨

https://account.venmo.com/u/Play4allfdl

https://www.paypal.com/donate?token=5yYiwv6x41NEbe7wixPfb5t8sO-r3w8q2r9lO7VkV2dPCS5HiCiHEyjdW3wY3S0cCGMzxD8JwrPEYY7i

We love you Charlotte, always and forever 😘

02/15/2023

One year

I enjoy anniversary dates, but this is one I’ve been dreading, telling myself it’s just another day and it doesn’t need to weigh more or less on us than the last 11 months already have, but one year of no new memories with you feels like hell. All the sibling pictures you’re missing from, no favorite soundtrack or movie of the week on repeat in the house… Although my body and mind no longer wake in panic because I can’t hear your ventilator, or feeding pump, or the smacking of your lips, the simplest of things can still stop me in my tracks with sorrow and pain. You are still felt everyday in our hearts and we miss your beautiful sassy self Charlotte, we all do so very much.

We would have found a way for you to see your sister in her first ever musical, Frozen Jr, over the summer and you would have loved Olaf in it. Your brother would still leave you random cars or Pokémon figures to play with and he would have protected you something fierce from your even sassier hurricane of a little sister…. AND I know lil sis would have gave you the best hugs. Dad misses singing to you and me, well, I feel so lost not caring for you. We hope that your soul is happy and at peace. Until we meet again sweet girl ♥️

- Today we each looked through your photo album and picked out a favorite memory to share

Dad’s pick is on your 2nd birthday, we all squished in for a photo and got a big smirk out of you.

Novella’s pick is of Hank and you in the van, he was always at your side to protect you.

Wyatt’s pick is the rainbow photoshoot we did because of the bright colors and you look so happy

Mom’s is a random day that you and your sister were hanging out, but you were constantly throwing your hand off your lap, that Sass ☺️

01/05/2023

It’s been more than 6 months since I’ve posted on this page. I have wanted nothing to do with the medical world and realized how much I was suppressing my nerves / fears through all the years with Charlotte. In constant battle / survival mode. Since fall, our youngest has needed a “simple”tear duct stent procedure and has dealt with ear infections. I now have zero chill when it comes to hospitals, doctor appointments, and illness. Needing to advocate has had me on the verge of tears, but I’m posting to say that it is 100% necessary and worth it ♥️

If you are living the medically complex / rare life it’s likely you are feeling hopeless, overwhelmed, and alone and I guess I just want to gesture a gentle hug and reinforce that you are not alone. Reach out and find a way to cope, build a community that surrounds you with nothing, but love and hope. It is within this that you will find the strength for yourself and your loved one through the most difficult of times.

May 2023 be a kind and peaceful year - Love the Patt family