Hi,

I've recently joined new and am very pleased to find this website and all of the information listed here.

My Daughter Aarchi who just turned 3 years old was diagnosed for canavans when she was around 6-8 months old. I've been in touch with Dr Leone for quite a while. She recently got admitted to the hospital for her first seizure and have been prescribed medicines for the same.

The first and foremost question i would like to ask is that, I've seen many new about clinical trials and people getting benefited from them but how do we qualify for that. Also in many post I've seen people raising money for surgery but I've not seen a post where it explains how did we raise it.

I'm basically from India and doing quite well in terms of money but the amount of money that needs to be raised for treatment looks totally out of my league. Its not that I wouldn't want to go through the pains to raise it but I dont know where and how to start(atleast in India).

Also I would like to know where to get special equipment for my daughter. For e.g. We have a stroller but it is too big for Aarchi and her head keeps dropping and we have to adjust her frequently.

I have seen quite a few posts about a lot of surgeries being performed for helping children with various obstacles but out doctor has not advised any....SO please let me know what these surgeries are for.

1. shunt

2. gastrostomy

3.fundoplication

4. botox

5. toenails and

6. adenoidsgastro-jejunal tube

7. jejunostomysurgical

First of all, do you have a competent neurologist or developmental pediatrician who has heard about Canavan. If you child is three, and you have not indicated any specific problems, than you don't need to know about any of the surgeries you listed. This group would be happy to offer information, but you need to say more about your child, their progress, what you are currently doing, so we can help you. As you see many people have read your post, but I think no one knows what you are really interested in.