Jen

Eight years since diagnosis, and Carter is showing us what resilience looks like. At 12 years old, he’s doing well for someone with Sanfilippo syndrome. And yes we did find out that he is type A which is considered to be the most common/severe. Every day is a reminder to cherish the moments that matter most. 💜 #pepememe #pepetheprawn #swipe #fyp #storytime #mco #diagnosis #diagnosisstorytime #sanfilipposyndrome #disney #disneyworld #tramatized #familytrip #medicallycomplex #carterschallenge #rarediseaseawareness #raredisease #momsofinstiktok #specialneedsmom #lifewithadisability #caregiverlife #advocatelikeamother #specialneedsfamily #sanfilippoawareness #sanfilippolife #parentingjourney

Replying to @Keazma nope, he was just doing his job. The news would have been shitty regardless where we were and honestly I’m thankful to have a doctor like him on our team. #letmeexplain #raredisease #diagnosis #diagnosisstorytime #doctor #genetics #genes #metabolic #sanfilipposyndrome #sanfilippo #carterschallenge #resentment #medicallycomplex #parenting #momlife

Replying to @Rosa💀🖤 thank you for brining this up bit it’s important to jote that just becuase a child might have predominant eyebrows and a low nasal bridge. It does not mean that they have Sanfilippo syndrome which mnay parents are now worried about. #sanfilipposyndrome #thelook #facialfeatures #genetic #phenotype #attenuated #sanfilippoawareness #raredisease #rarediseaseawareness #medicaladvocacy #caregiverlife #specialneedsmom #momlifeunfiltered #geneticdisorder #disabilityawareness #notjustalook #diagnosisjourney #rarediseasecommunity #specialneedsadvocate #undiagnosed #medicalmom #rarediseasewarrior #advocatelikeamother #specialneedsawareness #invisibleillness

Did you know there is a childhood version of Alzheimer’s? It’s called Sanfilippo Syndrome #DidYouKnow #TikTokHumanitiesCampaign #sanfilippo #sanfilipposyndrome #childhoodalzheimers #raredisease #genetic #fyp #LearnOnTikTok #learnfromme #raredisease #themoreyouknow #alzheimers

Replying to @🧌 thank you for asking and wanting to know more typically genome test take on average between three and six months to get back #genetics #genome #genometest #test #sanfilippo #raredisease #fyp #qanda #themoreyouknow #medicallycomplex #parenting #MomsofTikTok #learnontikok #caregiver #sahm

After we found out we were carriers m, we decided years ago not have any more biological children. That doesn’t mean that I dont sometimes think of the what if’s or hold space for the “dream” family I once had. To anyone else going theough this please know I see tou and hold you near and dear to my heart. You hold it all so well becuase you love your children and family fiercely ❤️ #momguilt #motherhoodunfiltered #navigatingaterminaldisease #rarediseasemom #sanfilipposyndrome #specialneedsparenting #parenting #breakingthestigma #griefandlove #medicallycomplex #anticipatorygrief #disabilityparenting #sahm #caregiver #carterschallenge

#onthisday