#rettsyndromeawareness

MOST RECENT

Spent the day supporting friends who is near and dear to me and attending the Portland Strollathon for Rett Syndrome to raise funds for a cure and to bring awareness of what Rett Syndrome is. #rettsyndrome #caityscrusaders #rettsyndromeawareness #pdxstrollathon #reverserett #portlandstrollathon #strollathon #rettawareness #rettawarenessmonth

The smell of honey fills my home.
I will always hold a special place in my heart for this wee girl & her family.
She changed my life for the better 馃挏馃挏#inhomechildcare #sproutschildcare #rettsyndromeawareness #curerett #family #childcare #goodbyes #inhomecare #childcareprovider #educator #carer #friends #friendships #bonds #lovethemlikemyown #inhomebusiness #appreciationpost #appreciation #givethanks #imsolucky #tearingup

Thank you everyone for your sweet thoughts and prayers! She's much happier today! I think what we had yesterday was a case of the typical teenage moodyness! 馃槣
#thisspeciallife
#mood
#teenagers
#nonverbal

This morning we participated in the Eastern CT Heart Walk with @dimebank. Georgia walked the entire route (over 2 miles!) herself, with the exception of when we walked through a tunnel (which scared her). I was so proud of her! 鉂わ笍馃挏 @american_heart #heartwalk #dimeisthere #communityiswhy #rettsyndrome #rettsyndromeawareness #autism #autismawareness #specialneeds #mygirl #mecp2

鈥硷笍GRAN D脥A 鈥硷笍 GRACIAS A TODOS, por venir, por colaborar, por hacerlo posible, por todos los organizadores @rettllegara @rettrace 馃憦馃徏馃憦馃徏馃憦馃徏馃憦馃徏 .
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#juntossumamosmas #entretodospodemos #investigaci贸n #carrerasolidaria #caminatasolidaria #rettrace #rettrace3 #pormuchosmaseventosasi

#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati #difundir
Foto de @vrc_78

So excited my sister Mallory was able to come to the Rett Syndrome Strollathon today. She enjoyed the day outside. And we got to meet a lot of families and their girls. #rettsyndrome #rettsyndromeawareness

And some days are like this...馃槵. I have no idea what's got her so sad and she is not able to verbalize it. So it'll be take me going through a long list of possibilities trying to fix whatever is obviously wrong. On days like these my prayer is always that nothing physically is wrong but that she's just really wants to watch something different or do something other than what she's doing. Back to investigating I go!
#thisspeciallife
#nonverbal
#thatfacetho

Algo se est谩 cociendo en @elrettodepaula
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Os iremos contando poco a poco. Por hoy, solo una pista: quedan 63 d铆as
Ma帽ana m谩s detalles .
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#savethedate #algoseestacociendo
#elrettodepaula #sumatealretto #retto #sindromederett #rettsyndrome #rett #rettgirls #rettsyndromeawareness #tenemosunrettoparati

Whilst 99% of the days are good ones, this is also the reality of rett syndrome. Becky is in pain or discomfort and gets frustrated that she can't tell us what's hurting her. We've sat in the car for 20 minutes whilst she's worked her frustration out. Had lots of cuddles until she feels okay again and now we're going shopping and for some dinner.
#rettsyndrome #rettsyndromeawareness #thisisrett #rettuk

7 years ago today I got my g-tube. My Mom was really scared but because of #Rettsyndrome and #apraxia I wasn't able to eat enough and not only was I not gaining weight I actually lost a little and I didn't have any to spare. This was the best decision ever! I'm healthier now, it's so much easier to take my meds and we don't have to worry about me getting enough nutrition or hydration. I'm lucky because I can still eat some things by mouth and my favorite is chocolate cake!!! .
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#rettsyndromeawareness #tubie #gtube #tubieawareness #health #specialneeds #feedingtube #MicKeybutton

RETT SYNDROME FACT FRIDAY!! .
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What is Rett Syndrome? .
.#OverPowerRett
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Rett syndrome is a neurodevelopmental disorder that affects girls almost exclusively. It is characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

#OverRett #ThisIsRett #RettSyndrome #RettSyndromeAwareness #October #CureRett #ReverseRett #Girls #Boys #Florida #Ambassador #Rett Family #GiveBack #Autism #Medicine #MECP2 #Chromosome #Research #RettSyndromeOrg

Eva has been a busy girl lately as she has started her horse riding lessons with Pony Majic. This will help to strengthen her posture and help to tone up the important muscles. Eva and her pony Charlie got on very well together!! She has also had a beautiful photo shoot done with The Butterfly Wishes Network who are a charity who offer photo shoots to families with life long conditions so that the family can have some beautiful memories.
Hope you are all well and a massive thank you to those who have bought tickets to our upcoming event with @rettuk - if you are interested the link and details are on Eva's Facebook page. 馃挏馃挏馃挏 鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅 鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅 鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅 鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅 鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅鉅#EvasDreams17 #EvasDreams #RettSyndrome #RettSyndromeAwareness #CureRett #AutismAwareness #Autism #Beautiful #Strong #MyStory #ReverseRett #RettSyndromeOrg @rettsyndromeorg #RettStrong #RettSyndromeAssociaton @njrett #Hope #HopeForEmilyRose #Awareness #Angels #MarwellZoo #NaomiHouse #Follow

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