Help by signing the petition

July 29, 2011

Governor Scott in Florida line item vetoed SCID Newborn Screening, even though the Newborn Screening Committee for Florida voted unanimously to start screening.  Let’s tell Governor Scott he was wrong.  You do not need to be a Florida resident to sign the petition.


CLICK NOW  to sign!

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CS Mother Pushing for SCID Screening in Texas

July 28, 2011
CS Mother Pushing for SCID Screening in Texas

Having a child is one of life’s greatest gifts. But, imagine having that gift taken away after only nine months.

That’s what happened to one College Station family.

Their seemingly healthy baby boy died in March from a disease rarely diagnosed, but treatable.

Now his mother is on a mission to raise awareness and save babies lives.

“He was just a really sweet, sweet little baby,” mother Jennifer Garcia said.

For the first seven months of life her son Cameron was perfectly healthy, but then he got a cold that didn’t go away.

“They noticed he sounded a little wheezy and of course immediately you think the head cold has just settled in his chest,” Garcia said.

Doctors diagnosed him with pneumonia and when it didn’t get better he was taken to Houston. After three weeks of tests doctors determined he had Severe Combined Immunodeficiency or SCID also known as the Bubble Boy Disease.

Cameron couldn’t develop a normal immune system and two weeks later he was gone.

“We had to literally make the decision what do we do from here,” Garcia said. “We had to hold him and take him off the ventilator and it was a very hard decision that no parent should ever have to make.”

SCID can occur in about one in 40,000 newborns. Although rare, if identified early, babies like Cameron can be treated with a bone marrow transplant.

“These kids can get cured, they can live a normal life,” Dr. Susan Pacheco with the University of Texas-Houston Medical School said.

Pacheco is the Houston immunologist who diagnosed Cameron.

“This is a fatal disease if it goes untreated and the outcome for after a transplant is much higher the early that you diagnose and the sooner that you treat,” Pacheco said.

A simple blood test at birth, costing between $5 and $7 dollars, determines if a newborn has SCID.

But the problem is, the test is not part of the Texas newborn screening panel. Cameron wasn’t tested at birth.

Jennifer is fighting to change that.

“I feel like I left the hospital running out the door saying how could this happen and I don’t want this to happen to another baby in Texas,” Garcia said.

Jennifer is one of many working on getting SCID added to the list of screening tests all Texas newborns are recommended to get. Five states currently test for the disease.

Florida’s governor like others in the past recently vetoed a bill, citing economic reasons.

“When you want to talk about money. Cameron’s medical bills came to almost one million dollars. How many babies could you have screened for a million dollars,” Garcia said.

Jennifer says she won’t give up until all babies are given a chance at survival. A chance Cameron did not get.

An opt-in pilot program is being conducted in Texas and the College Station Medical Center is on board. Starting in the fall or winter, the College Station hospital will start testing babies for SCID.

The Texas Department of State Health Services is conducting the pilot program. Results will help determine the best way to test for SCID when funding is available to add it to the Texas newborn screening panel.

Jennifer is also working with local lawmakers, hoping one will carry legislation into the next legislative session.

Click here to learn more about Texas pilot program

Click here to learn more about Texas pilot program

Click here for more information on SCID

Click here for more information on SCID

If you have any questions for Jennifer Garcia, you can reach her at cameroncrusade@yahoo.com.

linkback url: http://www.kbtx.com/home/headlines/CS_Mother_Pushing_for_SCID_Screening_in_Texas__126366573.html

Pioneering surgery gives Lincolnshire seven-year-old ‘new lease of life’

July 15, 2011

Pioneering surgery gives Lincolnshire seven-year-old ‘new lease of life’

 

WITH a cheeky smile and bucket-loads of energy, little Toby Booth seems like any other child as he plays at home.

But the 7-year-old has more reason than most to be cheerful following life-changing surgery for a condition that affects only a handful of children in the world.

 

Toby suffers from Severe Combined Immunodeficiency (SCID), which puts him at risk of life-threatening complications, including organ damage.

His condition is so complex that he has to be monitored by a team of specialist medics at The Children’s Hospital in Sheffield on a weekly basis.

And after his illness caused problems with his gallbladder, doctors carried out surgery to remove it.

Mum Helen Booth, 46, of Saxilby, says the pioneering keyhole surgery, coupled with drug infusions to help him fight infections, have given her son a “new lease of life”.

“With Toby’s condition, it has literally been like the film, Boy In The Bubble,” said Mrs Booth, a full-time mum and carer for Toby.

“Now, he goes to school and lives the life of a normal little boy. We went down to Poole and he went on to the beach and swimming – things that he had never been able to do before.

“This is what we’ve been fighting for, for Toby to have a normal life. You can’t have him go through all of this and then tell him that he can’t live a regular life.

“He’s the most cheerful and happy little boy and he never feels sorry for himself.”

Toby was diagnosed with the genetic condition aged two and has already overcome a series of life-threatening complications.

When he was just 3 years old, he had his spleen removed and a bone marrow transplant.

The recent operation at The Children’s Hospital by consultant paediatric surgeon Sean Marven, is hoped to help prevent further complications.

“Toby made a remarkably fast recovery after his surgery. He was up and about the next morning,” said Mrs Booth.

“We’ve been with the hospital for many years and have always been impressed with the care Toby has received from the whole team.

“He’s a very resilient character and we’re very proud of the way he copes with his condition.”

Mr Marven said: “The advantage of keyhole surgery is that the patient has just a couple of small incisions in their abdomen so they recover far more quickly than if they’d had traditional surgery.

“The next morning, Toby was out of bed and running around. We’ve only done a couple of gallbladder operations like this so far and they’ve all been highly successful.

“We like to be able to offer our patients the fastest and most reliable operations which get them back on their feet fast and have fewer risks.”

linkback url: http://www.thisislincolnshire.co.uk/Pioneering-surgery-gives-Lincolnshire-seven-year/story-13135004-detail/story.html


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