Irene's Question

[Guest guest]

Hi Irene,

I passed on your thank you to Chelsey.

You asked about how old Chelsey was when she became aware of having RSS and

how we discussed it with her.

Chelsey was 9 and Jackie was 3 when we were given the diagnosis of RSS at

Cornell Medical Center. We had gone there to try to find out why Jackie was

so skinny and small. We had been to Cornell six years before with Chelsey to

try to find answers to the same problem. At that time they didn't have any

answers or suggestions about what to do. They also didn't understand the

difficulities of feeding Chelsey. Doctors in those days didn't really

believe this type of difficulty existed. They assumed it was a feeding

problem due to the mother's methods of feeding the child.

At the appointment 9 years ago when we heard the word RSS both girls were in

the room. Chelsey was old enough to understand as Dr. Harbison explained RSS

to us. (I was holding tears back because I was scared about the word

syndrome.)

Chelsey's approach was to talk with her teacher about having RSS, but she

didn't really care to think about it or talk with her friends about it. She

didn't want her friends to look at her differently.

Regarding Jackie's approach, she looked at the label of having RSS as being

special. She didn't mind telling people. However, as she got older this

attitude changed and she no longer wants people to know.

All along, I've been very open with my daughters about RSS and what it means.

To us at this time it primarily means just short stature. The toughest

times are behind us.

Our primarily goal all along was to minimize the impact as much as possible

which RSS could have on their life. Probably the biggest challenge was the

developmental delays as it impacted their performance in school. It was a

real struggle to keep them on academic track in the early grades so that they

would stay on a level with their peers. They are both doing beautifully now.

The toughest years scholastically were 1st-3rd grade. Reading was the

biggest struggle.

Hope this helps.

Walbridge

The MAGIC Foundation

RSS DIvision Director