Rough copy of our Letter to the Parents ---->

[Guest guest]

Hi ,

I'm reposting the letter that we sent out to the parents.

Although it's to do with OI (I didn't mention RSS because I didn't

want to " over load " them with too much info or scare them away from

Olivia) I think you could revise it easily enough for G-tube info if

you keep along the lines of not being panicky about it and stressing

that it's OK for kids to play with Finlay, etc.

Hope this helps some!

Leah, mom to 9years and Olivia 5 years, 19lbs, 34 " , RSS, OI

>

> Ok everyone, here is the rough draft of our letter. I've

decided

> to write it from my point of view because it sounded a little

weird

> from Olivia's point of view.

>

> Please try to read it as though you just got it sent home from

> school and let me know what sort of ammending it needs!

>

> Dear Parents,

>

> Many of you already know our daughter, Olivia. At the beginning

> of the school year we would like to share with Olivia's classmates

> and their parents some information about her bone disorder.

>

>

>

> Olivia has a disorder called Osteogenesis Imperfecta or " OI " for

> short. Many people know it as Brittle Bones. Basically it means

> that Olivia's bones produce less of an essential protein and

> therefore they fracture more easily. Olivia plays with other

> children in our home as well as the homes of her friends on a

> regular basis. She can participate in all classroom activities,

> recess and even P.E. with close supervision and adaptations. We

> simply remind children who she interacts with that they need to

> be " gentle " and not to pull, push or pick her up.

>

>

> When Olivia encounters new situations with people who do not

know

> about her disorder we like to let parents and children know so

that

> if a fracture occurs there's already some understanding of the

> situation. The medicine that Olivia receives to increase her bone

> density helps in preventing fractures but she will continue to be

at

> risk for fractures. We never want other children to be afraid to

> play with Olivia, just to know that her bones can break more

easily

> than theirs. If there is any unease of having Olivia over for a

> play date we are more than willing to escort her to a new friends

> house or birthday party.

>

>

> We look forward to the new friendships that our children will

make

> and encourage you to call us (phone number here) if you have any

> questions about Olivia or her special needs. Thanks.

>

>

> Leah and Trent Fuller.