News Releases for April 2005
April 8, 2005
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Hoeven Signs Bill To Increase Coverage For Those Diagnosed With Russell-Silver Syndrome
BISMARCK, N.D. - Gov. John Hoeven today signed into law Senate Bill 2395 at a bill signing attended by Sens. Judy Lee and Dwight Cook, Reps. RaeAnn Kelsch and Dwight Wrangham, members of the Senate Human Services Committee and the Zietz family. Laikyn Zietz was diagnosed with Russell-Silver Syndrome shortly after birth.
SB 2395 was passed by the North Dakota Legislature to provide funding for medical food and growth hormone treatment for those diagnosed with Russell-Silver Syndrome. The bill authorizes the Department of Human Services to provide up to $50,000 per child each biennium to cover prescription and dietary expenses for individuals through the age of 18, regardless of income and at no cost to them.
“Helping children with extraordinary medical needs and the families who care for them is an important responsibility we all share,” Hoeven said. “This bill will go a long way in helping Laikyn and other individuals diagnosed with Russell-Silver Syndrome, as well as children across our state who are facing serious health issues.”
Russell-Silver Syndrome is a rare, inherited metabolic disorder that prevents the body from producing growth hormones. The body is unable to metabolize amino acids essential to building proteins, affecting growth and development.
Lee, the bill’s primary sponsor, sees this legislation as having an impact on many children statewide and not only those diagnosed with Russell-Silver Syndrome. “Senate Bill 2395 is important not only because it helps one child, but because it has raised the awareness of the needs of families throughout North Dakota who have children with extraordinary medical needs. We will determine what kinds of assistance may be possible for those families, so that their children get the services they need.”
“Laikyn’s whole future will be impacted by this bill,” said Heather Zietz, Laikyn’s mother. “Because her condition is so rare, we have had trouble finding the necessary assistance and resources to help her. Knowing that she will always be covered and that she will have the treatment she needs is a real comfort and relief for us.”
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