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THE WINNING TEAM By Sue Van Der Hout
by Sue Van Der Hout

Are you a good mother? It is a question that strikes deep into the heart of every woman who’s chosen the "go forth and multiply" path. For some, it’s making every lunch, or every soccer game, or family dinner (daily or weekly or as required). For others, it’s the quality of the communication and the connection. But in the case of Diane Wilson, it’s about saving her child’s life. Fair? Never. But what choice did she have?

THE WINNING TEAM
(Based on discussions with Diane Wilson and The Winning Team Website)
By Sue Van Der Hout

It was a fluke of nature.

Diane Wilson and John Gill met while in high school in Niagara Falls, fell in love and married. Unbeknownst to them they were both carriers of a gene causing Late Infantile Neuronal Ceroid Lipofuscinosis ("NCL").

Unbeknownst to them they were both carriers of a gene causing Late Infantile Neuronal Ceroid Lipofuscinosis ("NCL").

NCL is a rare disease, estimated to occur in only 2 or 4 of every 100,000 births in North America. There are about 10 variations of NCL collectively referred to as "Batten Disease". Diseased cells produce inadequate amounts of enzymes or defective enzymes that cannot eliminate the lipopigments in the cell. It is not understood what specific enzymes are at fault or how the stored lipopigments damage nerve cells in the brain, eyes, skin, muscle and other tissues. It is a degenerative neurological disorder for which there is no treatment or cure.

It is a degenerative neurological disorder for which there is no treatment or cure.

Children with NCL lose their vision, mobility, and ability to speak. Diane and John’s first two children, Carling and Colton, were born with the disorder. Their third child, now six, was not.

Carling was born in 1995 and had her first seizure in July 1998. Seizures became progressively more pronounced such that she was losing her balance and falling every 45 seconds. It took 18 months for a diagnosis. Traditional medicine offered neither a treatment nor a cure. Nonetheless, Diane and John with the diagnosis, came a sense of relief. The search for a diagnosis had prevented Diane and John from moving forward with treatment. Carling, Diane and John, worked extensively with a naturopathic doctor and other natural healthcare professionals to alleviate Carling´s seizures and symptoms.

Carling, Diane and John, worked extensively with a naturopathic doctor and other natural healthcare professionals to alleviate Carling´s seizures and symptoms.

Carling went to school until she was in grade 2. She learned to draw and to print the alphabet. Notwithstanding their best efforts, the disease slowly diminished Carling ´s capacity to perform basic bodily functions. In April 2004, while unable to speak, Carling was alert, aware of what was being said to her, able to walk with assistance and mobile with a wheel chair. She passed away at eight years, eight months in April 2004.

Colton was born May 14, 1998. Diana and John knew that he had a one in four chance of having the disorder. It was determined that he did. Early diagnosis allowed Colton to start taking anticonvulsant medication earlier in the progression of the disorder, allowing better control of the seizures. Treatments that provided relief to Carling, did not necessarily work for Colton. It was a new and different journey.

Treatments that provided relief to Carling, did not necessarily work for Colton. It was a new and different journey.

Colton’s seizures are now largely under control, he walks with assistance and he has a wheel chair and a stander for use at school. His smile is sunny. He loves taking the school bus, sitting in school with his friends and celebrating special occasions with them. At his birthday party in May, friends from school recorded cassette tapes for him to listen to while at home.

Diane and John are on call day and night to care for Colton, while continuing to work. John works in Niagara Falls as an insurance broker. Diane has been a valuable member of the Time Magazine [Canada] ("TIME") team in Toronto for many years.

When TIME asked Diane, "What do we need to offer you to keep you on?", Diane replied: "I need a job that is part time, no more than three days a week, where the work can be done in the middle of the night and where I earn twice my current salary."

TIME offered Diane part-time work [three days a week] which could be done in the middle of the night. Then TIME organized a fundraiser to help Diane and John out and became a lead sponsor for Project Possibility.

Diane is heading to India with Colton this December to explore what stem cell research might offer Colton. They need $250,000 to achieve Project Possibility (pay for the stem cell procedure and several years of equipment and therapy to regenerate the damaged tissue). So far they´ve raised $10,240, 4% of the money they need.

Define heart. Define strength. Define positive thinking. Optimism. Hope. Grit.

As Diane says, "When someone tells me, "It hasn’t been done," I hear, "It hasn’t been done yet!"

They need $250,000 to achieve Project Possibility (pay for the stem cell procedure and several years of equipment and therapy to regenerate the damaged tissue). So far they´ve raised $10,240, 4% of the money they need….. As Diane says, "When someone tells me, "It hasn’t been done," I hear, "It hasn’t been done yet!"

Join a winning team. Make a donation through Project Possibility and support this exceptional family with positive thoughts.

Batten Disease Support and Research Association
120 Humphries Dr., Suite 2
Reynoldsburg, OH 43068
800-448-4570 or 740-927-4298
www.bdsra.org
E-mail: bdsra1@bdsra.org

Children´s Brain Disease Foundation for Research
350 Parnassus Avenue, Suite 900
San Francisco, California 94117
(415) 566-5402

The Institute for Basic Research in Developmental Disabilities, part of the New York state government, conducts research on NCLs and maintains a registry of affected families.

Institute for Basic Research in Developmental Disabilities
1050 Forest Hill Road
Staten Island, New York 10314
(718) 494-0600

Office of Scientific and Health Reports Neurological Institute
P.O. Box 5801
Bethesda, Maryland 20824
(301) 496-5751
(800) 352-9424

Children’s Health System and University of Washington
www.geneclinics.org
Publishes GeneReviews, an online publication, funded by the National Institutes of Health (NIH). GeneReviews is expert-authored and peer-reviewed; it is intended to provide health care professionals with information about the use of genetic testing in patient diagnosis, management and genetic counselling.

Children Living with Inherited Metabolic Diseases
www.geneclinics.org
A national umbrella organization of the United Kingdom working on behalf of children, young people and families affected by metabolic diseases.

JNCL Research Fund
www.jnclresearch.org
A fundraising organization committed to seeking out and supporting science of excellence, relevant to the discovery of treatments for the most common degenerative brain disease of children, juvenile NCL.

The New Zealand Lysosomal Storage Disease Support Group
www.ldnz.org.nz
Facilitates contacts, information sharing and support among affected people and their families, within New Zealand and internationally; advocates accelerated research into the causes and treatment of Lysosomal Storage Diseases and improvements to the treatment and care of affected people.

The Batten Support and Research Trust
www.bsrt.org.uk
Raises public awareness of Batten Disease/NCL by whatever means. Through awareness comes knowledge and through knowledge comes hope. Research is based on demand and demand is created by awareness.

The National Institute of Health
www.nih.gov
American governmental organization supporting medical and behavioural research. Its mission is science in pursuit of fundamental knowledge about the nature and behaviour of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.

Centre for Human Genome Studies
http://www-ls.lanl.gov/masterhgp.html
Studies chromosome structure and function at the molecular level.

01.05.2008

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