Mental health hero: Overcoming loss, dealing with depression

Read more here

http://www.mlive.com/news/saginaw/index.ssf/2012/06/mental_health_hero.html

This is part one of a two part series about Steven Shapland, a physically and mentally disabled man who was honored by the Saginaw County Community Mental Health Authority last month.

BLUMFIELD TOWNSHIP, MI — Steven Shapland is a busy man.

Between working, building houses, volunteering and being a season ticket holder for the Saginaw Spirit, there isn't much free time in his life.

Each chromosome is responsible for hundreds of genes, which account for countless traits and characteristics. Although scientists have not been able to pinpoint the function of every chromosome, Shapland's mother said his trisomy 8 syndrome has manifested in number of ways.

Shapland's right arm, which is a few inches shorter than his left, contains extra bone and does not have full range of motion. He also has difficulty with the dexterity in his fingers and has extra cartilage in his ankles, among other things, Dinnan said.

"He's got a twofold thing, which makes him pretty rare," she said. "From the time he was young, the geneticist, the urologist, they all said they didn't have much to compare him to in the medical journals because he had two problems going on. And their prognosis was always, 'Wait and see, wait and see, wait and see.'"

Global News Trending...The children survivors of Trisomy 18 and 13 are increasing

Global News Trending

The children survivors of Trisomy 18 and 13 are increasing 
http://www.gtdaily.com/the-children-survivors-of-trisomy-18-and-13-are-increasing

Children with Trisomy 18 managed to survive to older ages. This study result will be a great news for parents of children with Trisomy 18 and 13 because more children are surviving for this disease. Details!!!!!Trisomy 18 and 13: More children are survivingStudy shows children with disorder are surviving to older ages.
Trisomy 18 is a rare genetic disorder that is considered fatal, but according a new study, there may be hope for the children affected.
Dr. Shawn McCandless, Director of the Center for Human Genetics at University Hospitals Case Medical Center in Cleveland said that the treatment and care of the children with Trisomy 18 and 13 may impact their ability to survive. “We don’t know how well these kids can do until we give them every opportunity to do their very best,” he said. (Danielle Adams – collegenews.com)

Australian-first genetic test boosts chances of a healthy baby

VICTORIAN couples with a history of miscarriages, those at risk of passing on genetic disorders and older women struggling to get pregnant have had their chances of delivering healthy babies boosted through a new Australian-first genetic test.

http://www.heraldsun.com.au/news/more-news/australian-first-genetic-test-boosts-chances-of-a-healthy-baby/story-fn7x8me2-1226341606862

TAG (Trisomy Advocacy Group) Stroll for HOPE - 2012 SOFT Conference

The Trisomy Advocacy Group Board Members will be participating in the STROLL FOR HOPE at the 2012 S.O.F.T. Conference and would love for your financial support in honor of our team.


Please follow the link and PLEASE SHARE THIS LINK on your personal page to help spread the word, and raise money for the S.O.F.T. organization.


SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18,13 and related chromosomal disorders.

Shorewood family keeps telethon tradition alive after losing son - Joliet Herald News

Shorewood family keeps telethon tradition alive after losing son - Joliet Herald News

Jonathan Cook of Shorewood changed the way his family saw the world during his 10 years of life.

He was born with trisomy 13, a genetic disorder also known as Patau syndrome.

Most babies with the disorder don’t survive more than a few days. One in 20 babies will live longer than six months.

Jonathan was destined to stay among the living for a longer time.

His parents, Ray and Cindy Cook, were told something was wrong after an ultrasound when Cindy was three months pregnant. Amniocentesis confirmed Jonathan had trisomy 13.

“At the time, we were encouraged to terminate the pregnancy because we were told it was incompatible with life,” Cindy said. “His quality of life would be so poor. You know, just a very grim picture was painted of what his future would be like — if he was born alive.

“That just really wasn’t an option for us,” she said. “We decided we would really just put it in God’s hands.”

Pursuing a normal life

Jonathan was a full-term baby, weighing 8 pounds at birth. He had fewer complications than other trisomy babies, Cindy said.

He needed oxygen and was fed through a tube in his stomach. But he came home from the hospital after only a week’s stay....To Read Full Article.

Photo info: Cindy Cook (below left) and her husband Ray (below right) hold a photo of their son Jonathan, who died at age 10 from Trisomy 13, as their sons (from left to right) Evan, 8, Nathan, 6, and Jacob, 8, stand nearby Monday, April 16, 2012, in Shorewood. The Cook family puts together a team for the Joliet Easter Seals telethon in memory of Jonathan. | Matthew Grotto~Sun-Times Media

Lessons Learned from Two Stories of Babies Diagnosed in Utero with Serious Genetic Syndromes

Last January Archbishop Charles Chaput delivered the Keynote Address to the 13th annual Cardinal O’Connor Conference on Life, which was held on January 22 at Georgetown University in Washington, DC. He was talking about children with special needs, most of whom would live much, much longer than Ella Rose and Sophia. But the wisdom of Archbishop Chaput’s  moving remarks made just prior to the March for Life rings equally true in this situation as well:

“These children with disabilities are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect and ennoble these special children is worth it because they’re a pathway to real hope and real joy. Abortion kills a child; it wounds a precious part of a woman’s own dignity and identity; and it steals hope. That’s why it’s wrong. That’s why it needs to end. That’s why we march.”


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Keeping our Trisomy Families in prayer off the NEW and Updated LWT13 Prayer BLOG

1. Trisomy in the NEWS - Bella Santorum's Fight
2. Trisomy 18 is a genetic anomaly occurring when a child has three chromosomes, rather than two, in the 23 pairs of human chromosomes
3. Rick Santorum may have abandoned his bid for the Republican presidential nomination, but families impacted by the rare genetic disorder that afflicts his 3-year-old daughter say he won’t be easily forgotten.
   
4. “During the pregnancy and early on, my local contacts and my online community - that got me through things,” Budd said. “Now, I’m at the point where Rebekah is fairly healthy and stable, and so I spend a lot of time helping other families that are just beginning this journey, or who have never known that there is a big community to help them.”
   "Kellett, the parent of a child with trisomy 18 who died earlier, said Santorum’s presence in the race was good for families like hers and the ones she advocates for. She’s met the Santorum family more than once, and said she connects them with families she works with.
   “The Santorums should be congratulated for the sacrifice they made,” Kellett said. “I know it wasn’t easy having their daughter and all the demands of running a presidential campaign. They, I think, should just be commended for that. Boy, in my eyes, they really are American heroes.”
   
   
   Mary Kellett founded the Minnesota-based group Prenatal Partners for Life which focuses on connecting families and children with trisomy related disorders with resources, Kellett said. "She estimates the group has provided assistance to children in all 50 states and 27 countries."
   
   
   Susan Budd works with the New Trisomy Advocacy Group TAG VIDEOS

WOW!!! Trisomy is getting LOTS of Attention.....We will soon be a household name!!!

Abstract from an article on http://www.todaysthv.com/default.aspx


http://www.todaysthv.com/news/article/206688/288/Trisomy-18-gaining-national-attention

Trisomy 18 gaining national attention...

WASHINGTON (CBS) -- Former GOP presidential candidate Rick Santorum drew attention to Trisomy 18 during his campaign. His 3 year old daughter has the rare genetic disorder.
Little Livia Harget plays with her mom who treasures every smile, every moment. Livia just celebrated her first birthday, but doctors didn't think she would come this far. Her mother Bethany says, "They said even if she makes it to birth don't expect her to make it through birth."

Couple holding charity ball to raise funds for Rainbows

Chcek out this article 

http://www.thisisnottingham.co.uk/Couple-holding-charity-ball-raise-funds-Rainbows/story-15654501-detail/story.html

ABSTRACT BELOW

A COUPLE whose baby girl lived for just five days are holding a fund-raising ball in her memory.

Isabel and Rick Shouler are staging the event on May 4, which would have been the day after baby Imogen's first birthday.

Imogen was born with a rare chromosomal abnormality, Patau's syndrome, also known as Trisomy 13, which was identified at a routine 20-week scan. Until then all had been going well with Isabel's pregnancy.

Trisomy Awareness ~ Trisomy Celebration in Orlando

Pictures: Trisomy support group meets in Orlando ~ Trisomy Celebration 2012

Families support each other facing rare genetic disorder

Caleb had Trisomy 18 and would have been 3-years-old on March 20. The term trisomy is used when there is an additional, or third, chromosome instead of two. For example, Trisomy 18 is the addition of a third, number 18 chromosome, and Trisomy 9 ...

Article from th Black Foot Journal

Check out this article that was published in the Blackfoot Journal. Another great Mom INSPIRED BY ANGEL.

Rewarded for dedication

Mom’s therapy for special needs child turned into a full career

BY TAMMY SCARDINO
tscardino@journalnet.com

BLACKFOOT — Patricia Farmer, a School District No. 55 administrator, entered the field of special education years ago after her son was diagnosed with trisomy 13 — a genetic disorder in which babies have three copies of genetic material instead of the usual two.