What resources are available to this family?

[Guest guest]

Hello all,

Just this week I discovered that an acquaintance of mine has a child with a

degenerative disorder. The child is 10 or 11, is medically fragile and no

longer able walk or crawl.

The family's source of help is a grandmother who lives nearby. That's it.

Because the child is medically fragile, any caregiver needs to be medically

savvy...the mother said that they used to be available for respite money through

a local agency, but because they needed someone with nurse's training, the

family could not afford to pay the remainder for help.

The parents say they cannot leave the child alone, not even to eat a meal at

home together, because someone needs to be in the room with the child.

(Apparently, it's difficult to get the child to the dinner table as well.)

I'm having a hard time sleeping, just thinking about these folks' situation.

The mother says that as the child gets bigger, it is getting harder to do the

lifting and physical care. There are other children in the family, and it would

be a fine thing if they could do some things with both the parents...like eat

dinner.

I'll bet this list has some ideas for my new friend. Like me, this family is

in DuPage County.

-Gail