This is my youngest angel Devon. She’s 9. She loves her school friends, drinks from Chick-fil-A and #puppydogpals She works harder than anyone I know to communicate and do everyday things we all take for granted and usually does it with a smile. Her team of therapists and @janejansen are our lifeline and I am so grateful for their time and patience. Being #rettsyndromeawarenessmonth here is a better understanding of what that diagnosis is and what Dev battles. @rettsyndromeorg Rett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls, more rarely in boys, and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 900 different mutations found on the MECP2 gene, most found in eight different “hot spots.” Rett syndrome is not a degenerative disorder with individuals living to middle age or beyond. Rett syndrome occurs worldwide in 1 of every 10,000 female births and is even rarer in boys. Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of the mutation and X-inactivation. Symptoms may include: Loss of speech Loss of purposeful use of hands Involuntary hand movements such as handwashing Loss of mobility or gait disturbances Loss of muscle tone Seizures or Rett “episodes” Scoliosis Breathing issues Sleep disturbances Slowed rate of growth for head, feet and hands #takesavillage #bekindtooneanother #rettsyndrome
Okkkk let’s do this. A high schooler, seventh and 1st…3 kids 3 schools #backtoschool #firstdayofschool #obligatoryfirstdayofschoolpic
Okkkk let’s do this. A high schooler, seventh and 1st…3 kids 3 schools #backtoschool #firstdayofschool #obligatoryfirstdayofschoolpic
Okkkk let’s do this. A high schooler, seventh and 1st…3 kids 3 schools #backtoschool #firstdayofschool #obligatoryfirstdayofschoolpic
Living her best life. Helping us all realize what really matters 💜 #happygirl #livingwithrettsyndrome #smile😊 @rettsyndromeorg 📸 @janejansen
I was told our hair holds our trauma and negative energy sooo… #snipsnip snipity ✂️ @jeremypmorgan #kbye #byeeee #shegone #newhair #bobhaircut #letsdothis
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
What a beautiful end to an era and a precious way to celebrate these amazing group of kids and this very special school. I will forever be grateful to you @oakhillschooltn Congrats @rocky.rooney1 I am so proud of you. #graduation #6thgrade #graduate #movingforward 💚
My loves. My strength. My light. Also the reason I take deep breaths and want to go to bed at 7pm #mothersday #motherhood #singlemomlife #iloveyou #proudmama #motherofthree #rettfamily
My loves. My strength. My light. Also the reason I take deep breaths and want to go to bed at 7pm #mothersday #motherhood #singlemomlife #iloveyou #proudmama #motherofthree #rettfamily
My loves. My strength. My light. Also the reason I take deep breaths and want to go to bed at 7pm #mothersday #motherhood #singlemomlife #iloveyou #proudmama #motherofthree #rettfamily
My loves. My strength. My light. Also the reason I take deep breaths and want to go to bed at 7pm #mothersday #motherhood #singlemomlife #iloveyou #proudmama #motherofthree #rettfamily
My loves. My strength. My light. Also the reason I take deep breaths and want to go to bed at 7pm #mothersday #motherhood #singlemomlife #iloveyou #proudmama #motherofthree #rettfamily
Santa’s Helper 🎄Once a #MissDecember always a Miss December 💚❤️ Fortunate to be painted by the amazing @oliviapinupart #pinup #playmate #holidayvibes
My angel girl. She brings so much love and life to everyone she meets. A true blessing with reminders of resilience, gratitude and patience. Thank you @steph_sorenson 📸for capturing our sweet moments. #thirdchild #rettsyndrome @rettsyndromeorg #angelgirl #devon
I love a gala and a 2 hunk date! @tnvoices #greengala @chadjamesgroup @psims01 #friendslikefamily #samespotdifferentdress #tennesseeorange dress by @alexperryofficial @charlotteolympia 🐯
I love a gala and a 2 hunk date! @tnvoices #greengala @chadjamesgroup @psims01 #friendslikefamily #samespotdifferentdress #tennesseeorange dress by @alexperryofficial @charlotteolympia 🐯
I love a gala and a 2 hunk date! @tnvoices #greengala @chadjamesgroup @psims01 #friendslikefamily #samespotdifferentdress #tennesseeorange dress by @alexperryofficial @charlotteolympia 🐯
