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Ashley Gain-Davis

@ashleygaindavis

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🩸liver donor
👶🏼 momma to an ultra rare XP variant-ERCC-1 deficient
humanKIND 🫶
Is it true? Is it kind? Is it necessary? 💚💜

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It has been just over 1 month since we received this life changing gift. Words will never be able to describe the impact this has made in our lives. Something that was not heavily covered was that these windows truly are extending Jake's life. Jake's blood work has been closely monitored since he was 3 weeks old. At 8 months of age, we received Jake's diagnosis and began protecting him from UV radiation. Slowly his blood work pertaining to his failing liver and kidneys began to improve. At first it was dismissed, then possibly a coincidence, than still more improvement, eventually after a year of monitoring it was undeniable!!! We are getting additional years with our child due to the generosity of @centrawindows, NovaTech, and Cardinal EMPLOYEES!!! The employees of these employee-owned companies made this happen. Gave years to our son. THANK YOU will never be enough. by @ashleygaindavis

Yeah kid, I am jumping for joy too, after this weeks lab results. 🤩💪👏

It’s no secret that @mdaviscnd and I go to exceptional lengths to protect Jake. ERCC-1 deficiency has little treatment options and no cure, prevention is our only option. We go to exceptional lengths in every aspect of Jake’s life; what he is exposed to, things he wears, conditions of his environment, what he consumes, everything!

2024 started out hard, Jake was in entry-level liver failure; facing the most complex liver disease, failure of the bile ducts. We were hurling toward a transplant, or the C-bomb.

However, due to the quick and diligent actions of his team, as well mine and Mats practises, I am over the moon to share that Jake’s liver is stable! It’s not great, it’s not awful, it’s stable. That is an enormous win!
An additional surprise to this joy, as Jake’s liver stabilizes, we see his cognitive abilities take off. We’re finally getting a handful of words out of our boy, he’s understanding more complex instructions, he’s able to comprehend and regulate emotions more easily. We’re watching him excel in every category! Including skin and vision 💚 I am proud to share that due to our dedicated efforts neither Jake’s skin or vision saw any further deterioration in the year of 2023. This may have been one of the most significant milestones to date; proving that the measures we go to in protecting and safeguarding what DNA functions Jake has, and are in fact working! Making a difference in his life expectancy & quality.

So why share on social?? Well, it’s just easier than a whole lot of text messages lol. Also, because our little man is changing the world! He is pioneering how ERCC-1 deficiency (and other conditions related to the inability to repair DNA) will be managed moving forward; and that is something worth sharing. 🎉🙌🏼

#ParentingTheRare #ERCC1 #NucleotideExcisionRepair #ercc1deficiency by @ashleygaindavis

Valentines Day - It’s a complex one for our family.

I have always loved the day! I was blessed growing up; my parents would make such a big deal about the day. Always going out of their way to make me feel special, spoiled, and loved on February 14th. I loved it!
Mat did too. February 14th is Mat’s, sister’s birthday. Mat & his sister (Stephanie) adore one another and have a wonderfully close relationship. He always loved celebrating his sister on Valentine’s Day.

February 14, 2022, Mat and I were told one day we would bury our son. Also, that continuing to grow our family biologically was not in the cards for us. We were understandably crushed, and instantly resented that particular date on the calendar.
But like all wounds, February 14th is beginning to heal.
2022 - we were inconsolable
2023 - we were MAD! So so very mad!
2024 - we are celebrating! Celebrating that we were chosen to love, raise, and introduce to the world our miracle boy who cannot repair his DNA.

So why the post? As a reminder of ‘this to shall pass’. Do not dwell. Do not let the negative take your positivity. Do not let whatever it is trying to take you down, keep you down. Don’t lose your Valentine’s Day, because of a blemish. Find the joy, focus on that!
📸 @nicoledanielle.ca
📍Gull Lake, Ab (AKA - where I grew up!)

#LaterGram #ValentinesDay2024 #positivevibes #raredisease #ercc1deficiency #thistooshallpass🙏 by @ashleygaindavis

⭐️Jake’s 1st day of Pre-K - he was in the ICU recovering from back to back liver transplants.
⭐️Jake’s 1st day of Kindergarten - he is on a week+ long hospital isolation for a sepsis blood injection.

I don’t say this for a pity-party, but instead of a reminder of the small things - Cherish it all. For moments that may not feel like it, but they are privileges.
#parentingultrarare #ERCC1 #livertransplant by @ashleygaindavis

Seven years ago, we promised to face whatever life brought us—never realizing just how much we’d face.

It hasn’t been easy, but every challenge has made us better, closer, and more resilient.

I’d still choose you, our life, and our boys every single time. 💚🩵💜💙 Happy Anniversary Hubs 🥰❤️😍
#weddinganniversary by @ashleygaindavis

@carhartt , eat your heart out! 🥰❤️
#MyBoys #Alberta #FatherSon #ercc1 #ParentingTheRare by @ashleygaindavis

time well spent 🤍

#MoreOfTheseMoments #ParentingTheRare #MyMiracle by @ashleygaindavis

40! You are fabulous 💫 thank you to everyone who took the time last week to celebrate with me. I was pampered from head to toe, and filled with more love and support than one person deserves 🥰
I’m thrilled going into this new decade with a sense of clarity and direction so pure, and a depth of gratitude deeper than I ever knew possible 💖

#40thbirthday #40thbirthdaycake #yyc #gratitude by @ashleygaindavis

Thanksgiving is my favourite holiday! It has all the benefits of Christmas (crisp cool air, comfort food & sweaters, loved ones) without the social pressures of consumerism.

Typically our home is bursting with friends and family on Thanksgiving; this year is different, this year is a hospital room.
Typically we’re giving thanks to lessons, family, and friends; the wonderful things that are immediately in view. This year is different, 8 weeks ago someone lost everything (a life) so that we could keep everything, our son‘s life!

As we are curled up in our cozy hospital room, looking at pictures of Thanksgiving past, our gratitude is focussed on the often overlooked …
The clean air we breathe, plentiful clean water to drink, and access to food sources; purchased, gifted, organic, food for everyone. The safe streets and communities we reside in. World class medical care, we have access to at our fingertips without opening our wallets.

This year (and always!) we’re grateful for those who generously give to foundations for the sick. Those who give their blood & plasma to banks, and more importantly their organs to others.

This year is different, gratitude is hitting deeper than ever. I pray we never lose sight of this year, in the hospital room, this depth of appreciation.

Happy turkey time, love the Davis’

#gratitude #thanksgiving2025 #livertransplant #livingliverdonor #ercc1deficiency #ercc1 #stollerychildrenshospital #raredisease by @ashleygaindavis

Where we’re going 🤩

#parentingtherare #ercc1deficiency #grateful #livertransplant #ercc1 #stollerychildrenshospital #livingliverdonor by @ashleygaindavis

Where we are today…

#stollerychildrenshospital #ercc1deficiency #livertransplant #livingliverdonor
#grateful by @ashleygaindavis

Turns out, getting the liver was just the beginning…

#stollerychildrenshospital #livertransplant #livingliverdonor #parentingtherare #grateful #ercc1deficiency #ercc1 by @ashleygaindavis