Lissencephaly

puntosporting

Hi,
I have a 1 year old son who was born with a very rare disorder known as Lissencephaly.
Its a genetic brain malformation basicaly My son Jamie's Brain did not develop properly in the womb.
The top of his brain is smooth when it should be grooved.
Its a severe disorder which will have a massive impact on his all round development.
Im just interested to hear from anyone who may have a child or know of a child with this disorder in ireland.
Even if anyone has heard of it themselves and would like to post any information on it im just curious to know how well known this condition is in ireland i had never heard of it untill my son was born.
Thanks

littlewolf

Dear puntosporting,

My son has Lissencephaly and I typed it into the search engine and your post came up. I don't belong on any online groups and was going to leave when I noticed you posted your message on my son's birthday (spooky) So I got over my "don't join internet groups" thing and joined boards.ie to get in contact.

My son was diagnosed with Lissenecphaly in 2000 and I don't need to tell you how devastating that was. I hope you have had more information since then but I know that it depends on you child's hospital and neurologist which is so unfair. Anyway there is an English group called the Lissencephaly Contact Group and they have members all over Ireland and the world they even have an Irish contact you should be able to call and when you join the group you be able to call or email parents (those that wish to be contacted) in Ireland. You can join online. I don't know if you have been in contact with the Jack and Jill foundation but they are an excellent resource and a great source of support and information. I don't know what I would have done without them.

I know it is many months since you posted and I hope your little boy is in good form. My son's form of Lissencephaly is very severe and we were told that he hadn't a chance of reaching 2 years old. The thing is nobody told him and he'll be nine on his next birthday. Life can be tough for us all but it can also be great fun and any little step at all is so appreciated. I actually caught him pretending to be asleep so I would't get him up out of bed the other day. So funny. Anyway maybe you could reply to this post if you wish to get in contact or whatever. I really don't know the form with getting in contact but I wish you and your family all the best. I hope the info was useful.


littlewolf

puntosporting

Thats amazing something told me to look in this forum ,i have not been on this particular forum of boards in months!
Thanks so much for taking the time to reply to my post!
My son Jamie is doing remarkably well considering his condition!
We are still in the process of getting an accurate and complete diagnosis on him it may be a while yet!
We at the time of his birth and the following few days where given a very similar outlook to yourself it was devastating!
But we are here now, he will be two in march and is feeding well and sleeping well and fingers crossed still seizure free!
He is an chirpy little fella with bags of energy and loves to just kick his legs and laugh out loud!
I took your advice and registered on Jack and Gill website the forum looks like it may come in very handy thanks for that!
I will look up the other suggestions and take it from there thanks again!