Charleigh's Journey

I absolutely cannot breathe while reading this post...... I am terrified. I hate that this is my future Its just all too much some days....so damn hard....but I will never stop fighting for you...ever!... I love you Charleigh #battendiseaseisanightmare #neverleaveme #itsokaynottobeokay #howisthisreal #nightsarehardforme #timeforquiettears #weneedacure #charleighsjourney

Raffle/Giveaway!!!! Amazing prizes to be won!!! Go to www.welovecharleigh.com to purchase your tickets! All proceeds go towards the purchase of a wheelchair accessible vehicle for Charleigh. #charleighsjourney #battendiseaseawareness #giveaway #raffle ... https://www.welovecharleigh.com

We are so blessed with such supportive friends, family and community. Charleigh and I were honored to model the clothes for the launch of Small Town Stitched by Alison , coming later this month!! Then to find out she is running a raffle/giveaway for Charleigh's Journey, just blew me away!! So grateful ... Thankyou Masika May Photography for these photos with my girl THANKYOU everyone for these amazing donated prizes!!!!!! If you would like a chance to win these incredible prizes, check out the website Thankyou for sharing and creating Batten Disease Awareness https://www.welovecharleigh.com #charleighsjourney #battendiseaseawareness #supportivefriends #neverstopfighting #smalltownstitched #masikamayphotography

These 2 amazing men are running and cycling to raise awareness for CLN2 Batten Disease. 100Km today!!!!! Beyond amazing Thankyou from the bottom of our hearts!! #battendiseaseawareness #charleighsjourney #raredisease #terminaldiagnosis #hopeforacure #neverstopfighting #support #love

Charleigh has been miserable and sick the last couple days....thank goodness her Covid swab came back Negative. Apparently just some mommy singing and snuggles is what she needed to PERK UP for the day! Music has always been amazing therapy for Charleigh We sure do dislike cold and flu season Hoping she kicks this cold quickly!... Stay safe out there everyone xo #charleighsjourney #mommyandme #musicistherapy

CHARLEIGH UPDATE Charleigh is having infusion #36 today. The Neurosurgeon has denied our request to explore the idea of a chest to brain port. He says its too risky of a procedure at this time. ... Charleigh will eventually need a new brain port so we will discuss our options again closer to that time. I dont know if im disappointed or relieved....so many emotions Today I will get my suction machine training from the Respiratory Therapist. This is to try to help Charleigh with her secretions and choking. Last thing Charleigh needs is to aspirate into her lungs and develop pneumonia. I know it can be hard to comment or read these posts, but honestly I just want to keep everyone updated on Charleigh. We appreciate all the love and support and sending Virtual hugs to everyone #charleighsjourney #battendisease #CLN2 #battendiseaseawareness #raredisease #terminaldiagnosis