Bluewater rallies to help ‘bubble boy’ family

Bluewater rallies to help ‘bubble boy’ family

By JOHN MINER, SUN MEDIA
Able to hold her one-year-old son only when she’s fully gowned, masked and gloved, Sheila Jeffrey clings to the hope she will soon see her toddler running and playing with other children.

“It’s been a long haul,” Jeffrey said from the Toronto hospital room that has been the centre of her life since Andre was diagnosed 10 months ago with what is often called “bubble boy disease.”

The medical term for the rare genetic disease is Severe Combined Immunodeficiency (SCID), a condition that leaves a person with little ability to fight infections.

It means Jeffrey can’t have direct skin-to-skin contact with her baby for fear of giving him an illness.

The Huron County mother has been home from Toronto only once since Andre was admitted to the Toronto Hospital for Sick Children on Aug. 9, 2006. She has two other children, ages five and seven, at home.

“They come with their dad to see me maybe once a month,” said Jeffrey, who has been living at Ronald McDonald House.

The community of Bluewater has rallied around the Jeffreys and is hoping a benefit dance in Zurich Friday will help offset some costs of her living in Toronto.

The first sign of a problem with Andre was when he was an infant and developed a head-to-toe rash.

Tests at Stratford hospital found he had low hemoglobin levels and he was taken to Sick Kids in Toronto.

There doctors diagnosed Andre with SCID, a condition made famous by David Vetter, a Texas boy who lived for 12 years in a plastic, germ-free bubble and died after he was removed from it.

In Andre’s case, doctors tested siblings for a possible bone-marrow transplant, but none matched.

Eventually, an unrelated donor who was a nine-out-of-10 match was found and Andre had his transplant last Dec. 15.

The transplant was a success, his mother said, but his recovery has roller-coastered since then. He has been admitted to the intensive care unit three times.

“The third time was very scary. He has had it very tough,” Sheila Jeffrey said.

Andre is struggling with “graft versus host disease,” a common side-effect of a marrow transplant.

Jeffrey said prospects are good that her son will recover, but it probably will be August before he can go home.

“Eventually, hopefully, he will be healthy, happy and running around,” she said.

BENEFIT DANCE

The Bluewater community north of London is rallying to help the Jeffrey family with a benefit dance at the Zurich Community Centre Friday from 8 p.m. to 1 a.m.

Article URL: http://lfpress.ca/newsstand/News/Local/2007/06/04/4232313-sun.html

This entry was posted on Monday, June 4th, 2007 at 12:41 pm and is filed under Personal stories in the news. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.

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What is SCID?

Severe combined immunodeficiency disease is the most serious primary immunodeficiency disorder. The defining characteristic of SCID is the absence of T cells and, as a result, lack of B cell function as well. Unless these defects are corrected the child will die of opportunistic infections before their first or second birthday. SCID can be caused by several different genetic defects, most of which are hereditary. In the past, children with this disorder were kept in strict isolation, sometimes in a plastic isolator or "bubble". Bubbles are no longer used as a standard of care, but the name remains a part of the history of SCID.

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Disclaimer: News articles come and go on the internet. When you find an interesting article and link to it, the link is dead in six months and the article is gone. I've copied many news articles here. I've included the information on the writer and linked back to the original publication. My intent is never to take anyone else's work as my own. My intent is to keep a repository of all the articles I find to be interesting. Many of these articles bring hope and encouragement to a family with a SCID child. Families with this disease are so rare, and they need to see that they are not alone in this struggle to keep their child alive. I hope this page is helpful to anyone with a family member or friend with any form of SCID.

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