Living with Cerebellar Hypoplasia (Ataxia) - Ethans Story

[speedomama]

We have a little boy that has cerebellar ataxia as well. This video was very enlightening. You mention in one of your posts that there is a facebook support page. Would you be so kind as to share it with me? anissamay@hotmail.com or Anissa May Campbell on facebook. Thank-you!

[Hilaryfan92]

Wow, that is amazing how his walking and everything has improved over time! He appears to be a little fighter and your love and affection has clearly paid off in his road to improvement:) Amazing<3

[lilloohoo]

Amazing and wonderful! Ethan is beautiful, and so determined! Thank you for sharing!

[brussau]

@mgccrx Unfortunatley the internet is full of half truths, it can be difficult to find the correct answers, I remember when we were told the deverstating news that your son has a medical condition, that he is not perfect. We turned to the internet, boy what a sad place it can be. But we followed our hearts and gave him maybe a little more time than our other son and it has payed off. Lots of repartition, love and sometimes finding different ways to solve problems works. Thanks Bill

[thechloechick]

Ethan is a beautiful child! Same amazing smile and disposition. Forgive my ignorance but are children with this movement or motor skill condition also learning impaired or is it simply the bodies movements that are affected?

[brussau]

@thechloechick I can only speak for Ethans learning ability, he is behind in his school by 2 years in most subjects, reading , writing ( hand movement is still jumpy but getting better, more practice) but he does excel in computers he is way out in front of most of his class mates in IT. So we think he is doing great. I was looking at his home work the other night & he had 100% correct answers. Thanks for the comment. Bill

[brussau]

Thanks for the comment Jerry. Whats your son's name? Your are right, there is so little information out there, and the doctors really don't know that much about what these kids have, it's just a guessing game for them but our kids prove them wrong. What part of the world do you guys live in? Sydney Australia for us. Thanks again. Bill

[jerh1220]

@brussau My sons name is Cole. We are in USA in the state of Alabama. Cole is driving a little now. He had to go through special one on one driving training but he is doing pretty good (only one accident in 4 months). Hope Ethan is doing well also

Jerry

[jerh1220]

Thanks for the post. Its so hard to find info and other people with children like this. My son has cerebellar hypoplasia. He is 17yrs old now. He still has a hard time with his Rs and walks with a gait but he's a healthy boy and doing alot more than the doctors told me he would. Thanks again, Jerry

[ellenyoochang]

ethan is such a inspiration! my 4 year old daughter has the same condition and it gives me such hope for her future! i did have a question-was there a cause for his condition? any complications at birth/pregnancy? i had a healthy/normal pregnancy/delivery and I have no idea what caused her condition.

[brussau]

Hi Ellen, we have had genitic's done but there is no reason why it has happened it is just one of those things. He was 6 weeks early at birth but they were just worried that his lungs may not be fully developed, but he was fine. Apart from that every thing was normal up to the age of 17 months when he was not walking on his own and we went for an MRI which told the story of a small under developed cerebellum. A lady in the USA has setup a group on facebook, if you wish find out more just ask me.

[kisstherainLOVER]

you will be even better Ethan :)

[hdeviney]

This was very inspiring to watch as I also have a 4 year old son (coincidentally also named Ethan) who has the same condition. There is so little information out there about this -- Thank you for posting.

[dieoderso]

little sweet one :)

[REDCLOUDX]

It's amazing how far he's come, I'm really happy for you guys!

[cathcartpt2]

My son's name is Luke.  I am so encouraged by your video. Your video and the one of Holly on YouTube give me hope that my son will soon function normally. Does Ethan get any other therapy besides speech?

[cathcartpt2]

Hi, Bill and Ness. I have a two year old son with cerebellar hypoplasia. I'm curious, when did Ethan start to talk?

[brussau]

Hi Cath, Ethan started speak therapy at age 2, the earlier you start the better. Once a week to begin with for the first 4-5 years, then slowly his speech started to come together. We didn't notice the difference in him but our friends who only saw 3 or 4 times a year would say how much he has improved, sometimes you are just to close to see the changes. Now days we go to speech therapy once a month, but that has been 10 years of therapy. What is your little mans name?

[TheKyra2000]

I feel sad for him!!! :'(

[cloeystella]

1liter of tears is such a good movie,u guys should watch it.Its about a 15 yr old girl suffering with Spinocerebellar Ataxia, who fought for 10 years.

[tamask72]

Ethan is a amasing boy. We have a son age 2 who was diagnosed with cerebellar hypoplasia age 10 months. We never meet anyone else with this diagnosis and no one can tell us the appropriate treatment. Would like contact with others with the same diagnosis and information on treatment. We live in Norway.

[brussau]

Hi, thanks for you comment. Unfortunately there is no treatment that we know of for hypoplasia (ataxia), but the one thing that these kids need is lot of love and attention. It has been a long and steady road that we travel with our little man, but he is growing up fast, Ethan is off to high school next year. The biggest thing that we have found is finding different ways to do things, and lots of repartition. If we can be of any help, just ask. Thanks , Bill & Ness.

[mmedefarge]

@brussau Does Ethan get Occupational & Physical Therapy in addition to Speech?

[brussau]

@mmedefarge Yes at school he gets physo once a month.

[maniac111111111]

I'm happy to see he's doing fine, but dear god, the angle that his legs were bent at made me writhe in pain.

[maniac111111111]

i'm happy to see he's doing fine, but dear god, the angle that his legs were bent at made me writhe in pain.

[soxeyer]

1 person is cruel (the thumbs down)

[rescuetoadopt]

GREAT JOB ETHAN!

Keep up the great work! Very impressive!

[iwilldoitdoit]

Hi My son has cerebellar hypoplasia and was diagnosed at 10 months after an MRI was taken. My son is receiving early intervention and we recently are pursuing alternative therapies like Feldenkrais/Anat Baniel Method. If I may ask what therapies have you tried that worked well for Ethan?

Thanks for sharing- great video

[MrJonnygrimble]

Hi, Ethan looks like he is really progressing ! My son Jake has recently been diagnosed with the same condition, Jake is nearly 3 and by watching Ethans story gives us hope for the future. Any help or info you may have that might help jake would be greatly appreciated.

Thankyou ,

Jon , Kim & Jake

[brussau]

Hi Jon, Kim & Jake. Thanks for your comment, Ethan continues to improve all the time, we don't see it but our friends see it. Any help you guys need for Jake just ask.

Thank you Bill & Ness

[MrJonnygrimble]

Hi Bill & Ness,

Thankyou for responding. Myself & Kim do have some questions that you may be able to help with, If its ok with you we will send you an e-mail next week. Have a nice weekend !

Jon & Kim

[breezy501]

This is great. It's wonderful to see the progress, he can only get better and better! Thank you for the video. GO Ethan! I see Olympics in the future.....or anything he wants! God Bless.

[brussau]

Thank you, he gets better everyday, its just a longer road to travel.

[sarahtx2005]

Wow, Great Job Ethan!

I have just rescued a little puppy that has Cerebellar hypoplasia. She is so sweet like you!

[brussau]

Thanks for that Sarah, he is just improving all the time, it is so good. Look after that puppy. Thank you.

[mimarinho]

Ethan is doing such a nice job! Congratulations! :-)

[brussau]

Thank you, he continues to improve every day, it just takes time and lots of fun and love.