Re: 2005 Senate Human Services Committee SB 2395 Silver Syndrome Testimony

April 5, 2005

I guess I should explain what this is all about. Some of you met the

Zietz family from North Dakota ( is mom, Laikyn is the little

girl) at the convention two years ago. Laikyn has been doing really

well on a G-tube and will be turning 3 years old. In North Dakota,

the law states that after a child turns 3, medical services will only

be supplemented by the state for children who are mentally retarded.

Under age 3, Laikyn's family received assistance with their pump food

supplies, etc.

This provision/exclusion would devastate this family, and makes no

sense whatsoever. The Zietz family has been actively working with

their political representatives. You would be VERY proud of them.

The House, Senate, etc. I have had phone calls from people very high

up in the ND political arena asking me my advice on RSS children on

behalf of one little girl, Laikyn.

Unfortunately, there is one senator who is now trying to put a halt on

the provisions (which would allow for formula/feeding supplies, GH,

etc. for RSS children). She is suddenly saying that there are at

least 8 other RSS children in the state, and hence, this provision

would be very expensive. They are trying to track down " who " these 8

are (none belong to MAGIC), and how old they are. My argument is that

of the 8, they could be spread across a range of ages -- not all will

have g-tubes, not all will choose growth hormone treatment, and not

all will use it at the same time. So one can't apply a

straight " formula " of cost to 8 individuals.

Anyway. It has been a long haul, and we should all commend the Zietz

family for their battle.

On that note, you all should know what the Forsyths and Wilkinsons and

others are doing in New Zealand on behalf of RSS and SGA families.

INCREDIBLE the battle they are waging with their government. I am

truly amazed by these families willingness to continue to go to battle

for other families (each is paying their own child's GH therapy out of

pocket).

Salem

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