Living with Cerebellar Hypoplasia (Ataxia) - Ethans Story

Ethan has cerebellar hypoplasia. He was diagnosed at age of 18 months(yr 2000), the first part of the video was taken when he was 2 years old by his neurolgist. The big question is do you think that he will ever walk on his own? The 2nd part was taken when he was 9. He has come such a long way, we are so proud of him. We know that he will only get better, he is so determined to do what he sets out to do.

Category:

Education

Tags:

• Baby

[mgccrx]

Seeing this is such a breath of fresh air. Our daughter is two and is undergoing testing to dertermine why she is off balance. After seeing the doctor and doing research on Ataxia, everything is just sort of falling apart. Until now! We do not have a diagnosis, but our daughter's symptoms are just like Ethan's! It is great to know that he is doing great, as will she and will life a long and healthy life, just a little wobbly!!

[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

[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

[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]

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

[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