Growing up with Dandy Walker Syndrome

[@lonelymtn]

As a Dad who has just learned his unborn son may have this, thank you. You presented facts and realities. I know that DWM can be different for everyone. Your story helps us to know that there are good stories out there.

[@usooalo3b09]

Hi how is it going? My son is 4years old now and was diagnosed at 6months. He is perfectly fine just extra quiet and extra smart. It can go both ways. There is hope. Stay strong.

[@lonelymtn]

@@usooalo3b09 we’ve since found Tobias has Joubert Syndrome - even more rare, but just as challenging. He’s doing really well. You can see his progress on Facebook: facebook.com/mrmoomah/

[@biancaraven6197]

Thank you for sharing your story. It brings so much hope around a syndrome that I have never hear about it. My 1-month baby has it, it was diagnosed in the womb, and I am so scared what the future will brings. Your example of happiness brings to my mom’s heart comfort. God bless you and thanks for sharing.

[@lucysoto33]

Thank you for sharing my 23 year old daughter has dandy walker with VP shunt. You and her share similar stories. She has mild she developed seizures at the age of 22 years of age. Has few not so noticable challenges but each day I thank God to have her in my life she is such a blessing in my life.

[@Beverly-e4z]

Your mother is an inspiration. I had a childhood friend whose first child had spina bifida and hydrocephalus. She had shunts that had to be changed due to growth and had to be catheterized. She is an adult now and works. My friend fought for her at school during those years. She would not allow her child to be put in special Ed where she felt she would not be challenged enough. I had so much respect for them both.

[@mostboringlady]

Thank you for sharing your story. You are doing a wonderful job with your life, discovering your talents and what makes you happy. I believe the reason the diagnosis is so rare is that there were no ultrasounds until recently. For all we know many more older people could be walking around undiagnosed.

[@arbizenimar7720]

Thank you for your video. My son was just diagnosed with dandy walker variant, he's 7, would love to hear more encouraging words from you.

[@minhbui3985]

I just want to say i'm so thankful for your video. My daughter has dandy walker and i'm so worry. Watching your videos give me hope. Please keep going. I'm so thankful for you sharing.

[@margithammer8835]

You've given me a lot of insight. I'm a special education teacher and I sometimes feel a little frustrated when my students don't want to use their accommodations. Coming from a successful adult with a disability such as you, still battling the fear of seeming different, gives me some more perspective about the students I work with. I'm thankful you shared your story.

[@JustBeeingMyself]

Thank you so much for your feedback. I will say this, though, over time I came to appreciate the benefits of my allowances and I would encourage anyone to make full use of them when available. And being different has allowed me to understand my clients from a different perspective.

[@christine875]

Thank you for the video...my daughter was diagnosed as well she's now one year old but she can't yet sit ..she has dandy walker malformation.....I now have hope thanks for the video...God bless you

[@melvayaredaguilar]

I am so sorry you went through that. My condolences to you and your family 💐

[@JimmiAlli]

Thank you very much for this lovely video. You are very inspirational and you present in a lovely way!

[@mtlosardo]

You have a great attitude and a wonderful mother. Thanks for sharing your story. I've heard of most congenital syndromes over the years, but tonight is the first time I heard of this one. It must be very rare. So, your video may likely help others.

[@marilene173]

I want to thank you for sharing! Congratulations on your marriage! I wish you a happy life! I have a grandchild,18ys, with this syndrome. We just found it this week! I love her very much and I hope she will be better and happy as an adult! Just like you!

[@kazecynthiamedissa1248]

You're such an inspiration! Blessings

[@jenniferpetty8636]

Love it. I have DW also. This what im also thinkingg About doing. Our stories are so different yet so similar. Id love to hear how your mom told you.

[@JustBeeingMyself]

Thank you for your comment. It so rare that I hear from others who have Dandy Walker. I would love to hear your story. To be honest, I can't remember how my mom told me. I'll find out from her.

[@jenniferpetty8636]

Same. And thatd so awesome to speak but i have no idea how to do it over KZbin lol

[@JimmiAlli]

Your mum sounds lovely.

[@glendawhite4477]

I just found out this week I have this Im 49 I never knew I had it i can't understand how no one didn't know I had behaviour problems as a child I'm shocked

[@amriishaq1018]

Hi, my first son diagnosed dandy walker variant by CT scan in hospital. He has a problem about his motoric and balance. 😢

[@JustBeeingMyself]

Amri Ishaq motor skills and balance is a challenge with Dandy Walker. I only started walking at age 2. To this day my hand eye coordination isn’t fantastic and I sometimes have balance issues.

[@amriishaq1018]

@@JustBeeingMyself you right, my son very good in memorize but so hard for writing and walking balance. Can he be better in balance?

[@rossandrewpantall7772]

Very very aresome keep safe ok what a friend in Jesus I protext all

[@arsasuke3693]

Hello... I have dandy walker also,, the variant is arachnoid cyst fossa posterior 😊 I'm 20 years old and come from Indonesia 🙋🙋🙋🙋

[@jenni3853]

Hello, i was diagnosed with Dandy walker malformation a year ago. I am 32 and I am still unsure if my symptoms come from dandy walker or not. I feel pressure in my head a lot. And i feel tired often with low muscle tone. I am still being evaluated. Prayers would be appreciated

[@user-raina_kh]

@@jenni3853 Did you have any symptoms when you were younger... How did you know you had dandywalker and what kind are you dignosed with thank you. HOPE YOU THE BEST

[@jenni3853]

@@user-raina_kh I could not stop having episodic migraines. Blood pressure and heart rate would go high. Sometimes I would throw up from severe migraines. My mom never knew i had it cuz they told her i needed glasses. I also know I had a heart arrhythmia and 3 holes in my heart when I was born. They closed on their own.. But I still felt extremely dizzy after laying down. It used to happen when i was very very young around 7yrs old to when i was 13. They would happen 1 time a month to twice a month. Sometimes 1 time every 3 months. But it was the same symptom and it feels like all the neurons in my head are spinning and its painful in a way. As I got into my 20s it happen more often. I was tired all the time and still had migraines. By the time I turn 30 they found it on a ct scan. I have dwm.

[@jenni3853]

@@user-raina_kh alex my dwm is a fluid filled cyst on tye 4th ventrical. My doctors believe my symptoms are not due to dwm, they sent me to an ENT and found out i had a hole in my semicircular canals that send send misinformation to the wrong area of my brain causing mix signals. With dandy walker you can have malformations on other parts of your body

[@user-raina_kh]

@@jenni3853 Hope you the best in life. Did you have any problems walking or talking when you were a baby?And please can you tell me which age you started to walk.when I was fullterm with my baby girl I found out,out of no where that my baby had no brian tissue which meant DWM.. I was shocked it was scary for me because through all my pregnancy my baby was healthy and out of no where this. I found out 9 days before I gave birth I wouldn't sleep eat just cry so when I had her she had her mri when she was 3 weeks old it was so scary for me. It showed she had minimal celebellar tissue and singnificant reduction in the size of the pons and was always Googleing things that made me worse.. My beautiful baby is 3 and half months a very healthy baby but am scared for what's to come in the future plz pray for me as I will pray for you

[@meglucino]

❤❤❤❤❤

[@christine875]

Did you go for any therapy

[@JustBeeingMyself]

I didn’t go for any formal therapy growing up, but my parents did a lot of developmental exercises with me through the years. My delays were and are mainly with balance and processing speed.

[@durgeshshardasmartstudy9194]

Hlo ma'am plz explain in Hindi (Translat in Hindi)ma'am meri Sister ki beti suffering from Dandywalker'sSyndrome her age is 22months .

[@JustBeeingMyself]

I will do my best to have subtitles made in time. The challenge is find people to do the translation.

[@durgeshshardasmartstudy9194]

@@JustBeeingMyself Ok ma'am