Bill Passed House & Senate - Prenatally & Postnatally Diagnosed Conditions Awareness Act

BROWNBACK, KENNEDY CELEBRATE PASSAGE OF PRE-NATALLY AND POST-NATALLY DIAGNOSED CONDITIONS AWARENESS ACT

WASHINGTON – U.S. Senators Sam Brownback (R-KS) and Edward M.
Kennedy (D-MA) celebrated Senate passage of the Pre-natally and Post-
natally Diagnosed Conditions Awareness Act, legislation which would
require that families who receive a diagnosis of Down syndrome or
any other condition, pre-natally or up until a year after birth, be
given up-to-date information about the nature of the condition and
connection with support services and networks that could offer
assistance.

"I am very pleased that the legislation co-sponsored by Sen.
Kennedy and me passed the Senate," said Brownback. "This bill will
greatly benefit expecting parents who receive the sometimes
overwhelming news that their unborn child may be born with a
disability. This legislation will provide parents with current and
reliable information about the many options available for caring for
children with disabilities."

The Pre-natally and Post-natally Diagnosed Conditions Awareness Act
would provide for the expansion and further development of a
national clearinghouse on information for parents of children with
disabilities, so that the clearinghouse would be better equipped to
assist parents whose children have recently been pre- or post-
natally diagnosed. The bill also provides for the expansion and
further development of national and local peer-support programs.
The bill also calls for the creation of a national registry of
families willing to adopt children with pre- or post-natally
diagnosed conditions.

"One of the hardest moments in the life of an expectant mother is
when she receives news that she is going to have a child with
special needs," said Melissa Wagoner, spokeswoman for Senator
Kennedy. "Access to the best support and information about the
condition, and the quality of life for a child born with that
condition, can make all the difference to a woman trying to make an
informed and difficult decision. Senator Kennedy believes this kind
of support is a vital element to strengthening a true culture of
life in America."

Currently, 90 percent of children pre-natally diagnosed with Down
syndrome are aborted. That percentage is similar for children pre-
natally diagnosed with other conditions such as spina bifida, cystic
fibrosis and dwarfism.

Serbia's mental institutions . . .

There has been a lot of talk on various adoption blogs about the Dateline special on Serbia's mental institutions. I watched it and it is truly horrific. You can watch it here (http://www.msnbc.msn.com/id/26332429)

The people & children in these institutions are not treated like humans. They are tied to cribs for hours at a time, they are fed a very small amount. Yet, the Serbia government tells parents that these institutions are better for these children than their parents who could raise them.

This really got to me and it is very sad and if I think about it too much, I will cry. As I was watching the Dateline video, I was holding my little 3 1/2 year old brother. He was sleeping on my lap. He is such a joy and a blessing to have in our family. God has truly blessed us with him.

My brother thrives greatly . . . he runs & jumps, laughs & plays with his siblings, and acts like any other toddler. The children in these institutions could have achieved many of the milestones that all toddlers have to achieve, if they were given the appropriate affection, love & care. But, now you have no idea what these children could have accomplished, because they have just laid in a crib, with hardly any attention & care, for their whole life . . . whether it be 4 years, 11 years, 21 years, etc.

~ Qadoshyah

Hi & more

I'm sorry I haven't updated the blog much at all the past few months. We have been extremely busy with our move from California to Oklahoma. Things are going well though :).

Richard from the DSTNI yahoo group posted this abstract earlier today and I thought it was pretty interesting. I'd like to see the full text of the study!

Serum cholinesterases in Down syndrome children before and after nutritional supplementation.

INTRODUCTION: Down syndrome (DS) children have different degrees of developmental abnormalities associated with mental retardation. A cascade of pathological changes triggering alterations in cholinesterase-mediated functions seems to be the cause of neuronal and muscular dysfunctions, such as memory loss, disturbed cognitive skills, and language impairment in virtually all DS individuals, but there are currently no efficacious biomedical treatments for these central nervous system-associated impairments. The present study aimed to evaluate the effects of nutritional supplementation on cholinesterases in serum of DS children. METHODS: Activities of acetyl- and butyrylcholinesterase were analysed in the serum samples of 40 DS children, along with an equal number of age- and sex-matched controls under study. RESULTS: The activities of serum acetyl- and butyrylcholinesterase were found to be low in DS children before nutritional supplementation, compared to controls, and showed considerable improvement after six months of supplementation of zinc in combination with antioxidant vitamins and minerals. A significant improvement was also observed in cognitive skills and behavioural patterns after nutritional supplementation. CONCLUSION: The present pilot study suggests the significance of early intervention with nutritional supplementation in DS children to ameliorate the severity of this disorder.