Episode 2 | Remarkable: Life with Rett Syndrome | Rett Syndrome Awareness
586 بار بازدید -
4 سال پیش
-
This year our Remarkable families
This year our Remarkable families join us and answer questions about their lives with Rett Syndrome. We hope that you not only learn a little something from each of us, but also find a little comfort if you feel like you're in this alone - because you're not. We are with you and we support you!
In this episode, our families talk about
💜 What has been the biggest medical issue for your child?
💜 The hardest part about Rett Syndrome?
💜 What kind of therapies have been useful for your child?
💜 What equipment has been useful?
💜 How does your son/daughter communicate?
💜 How has the pandemic effected your daily lives?
💜 Any misconceptions about Rett Syndrome? What are you always correcting people on, when it comes to your child and Rett?
We have not covered everything about Rett in these videos because, those were not our stories to tell. Reach out with your story if you feel ready, we'd love to hear from you.
Please hit 'like' and share each of these videos on Facebook and Instagram, so we can get the word out about Rett Syndrome for Rett Syndrome Awareness Month this October! Rett Syndrome life can be very intense already, and if you cannot bring yourself to watch these videos - it's okay. Consider sharing these videos instead, and bookmark to come back when you are ready.
✨ IMPORTANT ✨
If you suspect your child has Rett Syndrome, please seek professional medical help from your paediatrician or doctor. This video series was created to share our stories, for information and for support only, for Rett Syndrome Awareness Month 2020. Head over to the links below for more information that you can take to your doctor.
✨ INFORMATION ✨
Things mentioned in this episode are listed below. Please speak to your healthcare provider or therapist about any of these things for YOUR child.
- Long QT
- Hypotonia (low muscle tone), seizures, sleep apnea
- OT = Occupational Therapy, PT = Physical Therapy, ST = Speech Therapy, Horseriding Therapy = Hippotherapy, ABM = Anat Baniel Method , ABA= Applied Behavourial Analysis, PODD=Pragmatic Organisation Dynamic Display, AAC= Augmentative and Alternate Communication, PECS = Picture Exchange Communication System
- Eye gaze technology
- Proloquo2go
- High low chair
- Hand mitts
- Arm braces
- Wrist splint
- Stander
- Gait Trainer
- Orthotics
- Adapative stroller
- Adaptive car seat
✨ LINKS ✨
Below are some links to more information about Rett, and what was mentioned in this episode:
- Boys with Rett Syndrome!
https://www.rettsyndrome.org/about-re...
✨ Where we've found support online ✨
- rettsyndrome.org - https://www.rettsyndrome.org/
- Facebook group - Rett Syndrome Family Support Forum - Facebook: 250235058326930
- Rett Syndrome Association of Australia (RSAA) - https://rettaustralia.org.au
- Reverse Rett - https://www.reverserett.org.uk/
- Rett Syndrome Research Trust (RSRT) - https://reverserett.org/
⭐️ Fundraising for a cure for Rett Syndrome ⭐️
Currently, there is no cure for Rett Syndrome but many incredible teams are working on it. These are just a few places where you can go to help fund a cure for Rett Syndrome and towards supporting our families. Please connect with them and ask them how you can help.
Rettsyndrome.org https://www.rettsyndrome.org/get-invo...
Rett Syndrome Research Trust https://reverserett.org/donate/
Rett Syndrome Association of Australia - https://rettaustralia.org.au/donate/
Girl Power 2 Cure https://www.girlpower2cure.org/donate/
Rett UK https://www.rettuk.org/fundraising-wh...
Ontario Rett Syndrome Association https://www.rett.ca/store/donation/
In this episode, our families talk about
💜 What has been the biggest medical issue for your child?
💜 The hardest part about Rett Syndrome?
💜 What kind of therapies have been useful for your child?
💜 What equipment has been useful?
💜 How does your son/daughter communicate?
💜 How has the pandemic effected your daily lives?
💜 Any misconceptions about Rett Syndrome? What are you always correcting people on, when it comes to your child and Rett?
We have not covered everything about Rett in these videos because, those were not our stories to tell. Reach out with your story if you feel ready, we'd love to hear from you.
Please hit 'like' and share each of these videos on Facebook and Instagram, so we can get the word out about Rett Syndrome for Rett Syndrome Awareness Month this October! Rett Syndrome life can be very intense already, and if you cannot bring yourself to watch these videos - it's okay. Consider sharing these videos instead, and bookmark to come back when you are ready.
✨ IMPORTANT ✨
If you suspect your child has Rett Syndrome, please seek professional medical help from your paediatrician or doctor. This video series was created to share our stories, for information and for support only, for Rett Syndrome Awareness Month 2020. Head over to the links below for more information that you can take to your doctor.
✨ INFORMATION ✨
Things mentioned in this episode are listed below. Please speak to your healthcare provider or therapist about any of these things for YOUR child.
- Long QT
- Hypotonia (low muscle tone), seizures, sleep apnea
- OT = Occupational Therapy, PT = Physical Therapy, ST = Speech Therapy, Horseriding Therapy = Hippotherapy, ABM = Anat Baniel Method , ABA= Applied Behavourial Analysis, PODD=Pragmatic Organisation Dynamic Display, AAC= Augmentative and Alternate Communication, PECS = Picture Exchange Communication System
- Eye gaze technology
- Proloquo2go
- High low chair
- Hand mitts
- Arm braces
- Wrist splint
- Stander
- Gait Trainer
- Orthotics
- Adapative stroller
- Adaptive car seat
✨ LINKS ✨
Below are some links to more information about Rett, and what was mentioned in this episode:
- Boys with Rett Syndrome!
https://www.rettsyndrome.org/about-re...
✨ Where we've found support online ✨
- rettsyndrome.org - https://www.rettsyndrome.org/
- Facebook group - Rett Syndrome Family Support Forum - Facebook: 250235058326930
- Rett Syndrome Association of Australia (RSAA) - https://rettaustralia.org.au
- Reverse Rett - https://www.reverserett.org.uk/
- Rett Syndrome Research Trust (RSRT) - https://reverserett.org/
⭐️ Fundraising for a cure for Rett Syndrome ⭐️
Currently, there is no cure for Rett Syndrome but many incredible teams are working on it. These are just a few places where you can go to help fund a cure for Rett Syndrome and towards supporting our families. Please connect with them and ask them how you can help.
Rettsyndrome.org https://www.rettsyndrome.org/get-invo...
Rett Syndrome Research Trust https://reverserett.org/donate/
Rett Syndrome Association of Australia - https://rettaustralia.org.au/donate/
Girl Power 2 Cure https://www.girlpower2cure.org/donate/
Rett UK https://www.rettuk.org/fundraising-wh...
Ontario Rett Syndrome Association https://www.rett.ca/store/donation/
4 سال پیش
در تاریخ 1399/07/09 منتشر شده
است.
586
بـار بازدید شده