lissencephaly?

[milkmommie]

My Grandson was diagnosed today. He is in a different state with his Mama. My son, his Daddy is with us here. Mama and Daddy are teenagers.

From what I can tell by researching on the internet, most babies with Lissencephaly don't live past the age of two. I have however found some personal stories of families with kids with this who have lived much longer than two years.
I am just wondering if anyone here has any experience with this disorder and can tell me more about caring for a child with lissencephaly and how long they might live.

[2boyzmama]

I'm so sorry! Does your son's girlfriend have support where she is? To be a teenager, and a single mom, of a special needs child must be overwhelming!

I don't know much about lissencephaly, but from a quick google search, it looks like there can be varying degrees, and that some kids can live into their teens, although cognitive development is very low. Can I say, though, that in cases like this, it isn't always how long can he live, but how great a life he can have while he is alive. And not just the baby, but his parents. They need to feel love and support and absolutely no judgement for as long as they have their son with them on this earth. This is the hardest thing they will ever go through, and will no doubt effect the rest of their lives.

I hope that whatever happens, your son, his girlfriend, and their baby will be well supported and find peace. What a hard situation.

[milkmommie]

Thank you! Apparently it's a fairly rare condition. I suppose that's a good thing. I would never wish this on someone else.

Unfortunately, the Mama's family of origin is more than slightly dysfunctional. She does not have a very good support network at all. I am doing my best. But it is difficult from 1000 miles away. I am going to do what I can to make phone calls and do research and possibly arrange for a fund raiser. In addition to being a single teen Mom who's baby has an extremely debilitating disorder, she has no medical coverage for him. The bills are already mounting.

Thank you for your thoughts.

[~cassie]

I have never heard of it but my thoughts are with them. As far as medical coverage--has she tried medicaid? The income guidelines are different for special needs kids than what they are for regular kiddos. Also SSI if she hasn't looked into that would provide some money to care for him.

[moongazer]

I am so sorry that your family is going through this. I am glad your son and the baby's Mama at least have you for support.

You might want to see if you can get the Mama in touch with one of the social workers at the hospital where your grandson is being treated. They were wonderful at helping us to find what financial assistence we qualified for.