How we found out about Leo’s Disability | Cerebellar Hypoplasia & Ataxic Cerebral Palsy
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- เผยแพร่เมื่อ 2 ต.ค. 2024
- Hey there, welcome back to Roanna Jane!
In this video I'll be sharing with you about my son Leo's journey with Cerebellar Hypoplasia, Ataxic Cerebral Palsy and Ocular Motor Apraxia. It's emotional, it’s quite long (sorry!) but it's our story. Grab some tissues and join me as I share how we found out about Leo’s disability. Let's dive in together!
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Roanna xx
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Hello, I don’t usually leave comments. I’m 29 and have ataxic and spastic cerebral palsy. I use a manual wheel chair and go to physical therapy. I wasn’t diagnosed for some time.
I just wanted to give you hope and let you know Leo will be ok and have a happy life. Everyone’s case is different. I was so spastic I was born cross eyed. After a failed strabismus surgery I now have a lazy eye. I use my right eye predominantly. I have issues with depth perception but it is wonderful you have early intervention.
A lot of people with cerebral palsy do well but it can be traumatic to find out. I want to let you know you’re doing everything he would need to succeed. I don’t know if he has spasticity but baclofen
Has been incredible for me. I wish you all the best. Reach out with any questions
As a mother myself. I can imagine how traumatic this discovery can be finding out your child could have a profound disability. And as a person who has worked with children who have disabilities, I would like to say that yes, it's going to be a difficult journey, there are lots of parents with children who have disabilities. You'll have an amazing and supportive community behind you. Early Intervention is a hugely positive thing to look into. The SPED departments in day care and preschools are really good advocates and of course the rest of Leo's care team can help him lead a life that he is capable of. 15% of the world has some form of disability. And we will happily accept Leo into our community.
Love from an Autistic Mum
Thank you ☺️ 💕
Thank you for sharing this video. My son 20 months now has Pontocerebellar hypoplasia type 9 (PCH9) and I see all those things in him that you shared in your video. And like you said, everything in MRI and scans came up normal but the signs getting worse. He just started sitting by himself and crawling a little bit, also he can stand by holding onto something (wall or door or something). You didn't mention anything about touch sense, because my son doesn't let anyone touch him, like we would be trying to help him and yet he would refuse to take that help. He doesn't speak much, and he has a problem with loud noises, like horns or other kids speaking loudly. I am also going to share a video of my son and the problems he faces, may be someone could help. Doctors say that there is no known cure for it, because it's so rare. But I cannot sit and watch him being miserable among other kids. Love from Pakistan!
🌟 Thanks for sharing your story
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⭐️Thanks for sharing Roanna. Ben and you should be really proud of yourselves. You have done an amazing job and definitely Leo couldn’t be in better hands.
Thanks so much! 😊
🌟 This video deserves more than one star! What a journey you've been on!! And you've shared it so well on this video (I love all the clips!). Leo will be so proud of his parents and their hard work to ensure he has the best start possible. I can't imagine the grief of hearing the news of such a diagnosis, but I am in awe of how well you've turned the grief into fuel to get the best supports for Leo. He's in great hands with you and Ben 💙
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So good to hear that you had some intelligent drs pick it up early to help you get the right therapies for Leo. You’re all doing amazing. We’ve found DMI therapy very helpful for motor development.
Thank you ☺️ Leo has been lucky to have such a supportive team. We have tried DMI therapy during a couple of intensives which Leo didn’t like but helped a lot. Thinking about doing weekly sessions with him as well
@@roannajane2759 my daughter has a small cerebellum but we are still doing genetic testing to find out why. She’s three and just started walking after a few weeks of consistent DMI. Lots of cartoons in the sessions definitely helped her get through it :)
🌟 Thank you for sharing! I followed you back in the day for nursing but learning about this has been equally interesting! so thank you! Clearly Leo has the best parents ever doing the best job! x
Thank you ☺️ x