A Life Everlasting (24 page)

UW Organ and Tissue Donation

450 Science Drive, Suite 220

Madison, WI 53711

Phone: (608) 262-3248

Fax: (608) 262-9099

www.uwhealth.org/organ-donation/organ-and-tissue-donation/10868

MINNESOTA

LifeSource Organ and Tissue Donation

2225 West River Road North Minneapolis, MN 55411

Phone: (612) 800-6100

Fax: (612) 800-6331

www.life-source.org

UW Organ and Tissue Donation

450 Science Drive, Suite 220

Madison, WI 53711

Phone: (608) 262-3248

Fax: (608) 262-9099

www.uwhealth.org/organ-donation/organ-and-tissue-donation/10868

MISSISSIPPI

Mississippi Organ Recovery Agency

4400 Lakeland Drive

Flowood, MS 39232

Phone: (601) 933-1000

Fax: (601) 933-1006

www.msora.org

Mid-South Transplant Foundation, Inc.

8001 Centerview Parkway, Suite 302

Memphis, TN 38018

Phone: (901) 328-4438

Fax: (901) 328-4462

www.midsouthtransplant.org

MISSOURI

Midwest Transplant Network

1900 W 47th Place, Suite 400

Westwood, KS 66205

Phone: (913) 262-1668

Fax: (913) 262-5130

www.mwtn.org

Mid-America Transplant

1110 Highlands Plaza Drive East

St. Louis, MO 63110

Phone: (314) 735-8200

Fax: (314) 991-2805

www.midamericatransplant.org

MONTANA

LifeCenter Northwest

3650 131st Ave SE, Suite 200

Bellevue, WA 98006

Phone: (425) 201-6563

Fax: (425) 688-7641

www.lcnw.org

NEBRASKA

Nebraska Organ Recovery System

8502 West Center Road Omaha, NE 68124

Phone: (402) 733-1800

Fax: (402) 733-9312

www.nedonation.org

Iowa Donor Network

550 Madison Avenue

North Liberty, IA 52317

Phone: (319) 665-3787

Fax: (319) 665-3788

www.iowadonornetwork.org

NEVADA

Nevada Donor Network

2061 East Sahara Avenue

Las Vegas, NV 89104

Phone: (702) 796-9600

Fax: (702) 796-4225

www.nvdonor.org

Intermountain Donor Services

230 South 500 East, Suite 290

Salt Lake City, UT 84102

Phone: (801) 521-1755

Fax: (801) 364-8815

www.idslife.org

Donor Network West

12667 Alcosta Boulevard #500

San Ramon, CA 94583

Phone: (888) 570-9400

Fax: (510) 444-8501

www.donornetworkwest.org

NEW HAMPSHIRE

New England Organ Bank

60 First Avenue

Waltham, MA 02451

Phone: (617) 244-8000

Fax: (617) 244-8755

www.neob.org

NEW JERSEY

Gift of Life Donor Program

401 North 3rd Street

Philadelphia, PA 19123

Phone: (215) 557-8090

Fax: (215) 557-9359

www.donors1.org

NJ Sharing Network

691 Central Avenue

New Providence, NJ 07974

Phone: (908) 516-5400

Fax: (908) 516-5501

www.njsharingnetwork.org

NEW MEXICO

New Mexico Donor Services

1609 University Boulevard NE

Albuquerque, NM 87102

Phone: (505) 843-7672

Fax: (505) 343-1828

www.donatelifenm.org

NEW YORK

Center for Donation & Transplant

Albany Medical Center 218 Great Oaks Boulevard Albany, NY 12203

Phone: (518) 262-5606

Fax: (518) 262-5427

www.cdtny.org

Unyts

110 Broadway

Buffalo, NY 14203

Phone: (716) 853-6667

Fax: (716) 853-6674

www.unyts.org

LiveOnNY

460 West 34th Street, 15th Floor

New York, NY 10001

Phone: (646) 291-4444

Fax: (646) 291-4600

www.liveonny.org

Finger Lakes Donor Recovery Network

Corporate Woods Brighton, Building 30, Suite 220

Rochester, NY 14623

Phone: (585) 272-4930

Fax: (585) 272-4956

www.donorrecovery.org

Center for Organ Recovery & Education

RIDC Park

204 Sigma Drive

Pittsburgh, PA 15238

Phone: (412) 963-3550

Fax: (412) 963-3564

www.core.org

NORTH CAROLINA

Carolina Donor Services

909 East Arlington Boulevard

Greenville, NC 27858

Phone: (252) 757-0090

Fax: (252) 757-0708

www.carolinadonorservices.org

LifeShare of the Carolinas

5000 D Airport Center Parkway

Charlotte, NC 28208

Phone: (704) 512-3303

Fax: (704) 512-3056

www.lifesharecarolinas.org

LifeNet Health

1864 Concert Drive

Virginia Beach, VA 23453

Phone: (800) 847-7831

Fax: (757) 227-4690

www.lifenethealth.org

NORTH DAKOTA

LifeSource Organ and Tissue Donation

2225 West River Road North

Minneapolis, MN 55411

Phone: (612) 800-6100

Fax: (612) 800-6331

www.life-source.org

OHIO

LifeCenter Organ Donor Network

615 Elsinore Place, Suite 400

Cincinnati, OH 45202

Phone: (513) 558-5000

Fax: (513) 558-8843

www.lifepassiton.org

Life Connection of Ohio

3661 Briarfield Boulevard #105

Maumee, OH 43537–1694

Phone: (419) 893-4891

Fax: (419) 893-1827

www.lifeconnectionofohio.org

Lifebanc

4775 Richmond Road

Cleveland, OH 44128-5919

Phone: (216) 752-5433

Fax: (216) 751-4204

www.lifebanc.org

Lifeline of Ohio

770 Kinnear Road, Suite 200

Columbus, OH 43212

Phone: (614) 291-5667

Fax: (614) 291-0660

www.lifelineofohio.org

Kentucky Organ Donor Affiliates

10160 Linn Station Road

Louisville, KY 40223

Phone: (502) 581-9511

Fax: (502) 589-5157

www.kyorgandonor.org

OKLAHOMA

LifeShare Transplant Donor Services of Oklahoma

4705 NW Expressway

Oklahoma City, OK 73132

Phone: (405) 840-5551

Fax: (405) 840-9748

www.lifeshareoklahoma.org

OREGON

Pacific Northwest Transplant Bank

2611 SW 3rd Avenue, Suite 320

Portland, OR 97201

Phone: (503) 494-5560

Fax: (503) 494-4725

www.pntb.org

PENNSYLVANIA

Gift of Life Donor Program

401 North 3rd Street

Philadelphia, PA 19123

Phone: (215) 557-8090

Fax: (215) 557-9359

www.donors1.org

Center for Organ Recovery & Education

RIDC Park, 204 Sigma Drive

Pittsburgh, PA 15238

Phone: (412) 963-3550

Fax: (412) 963-3564

www.core.org

LiveOnNY

460 West 34th Street, 15th Floor

New York, NY 10001

Phone: (646) 291-4444

Fax: (646) 291-4600

www.liveonny.org

PUERTO RICO

LifeLink of Puerto Rico

Daimler-Chrysler Building, Metro Office Park

Suite 100, Calle 1, #1

Guaynabo, PR 00968-1705

Phone: (787) 277-0300

Fax: (787) 277-0876

www.lifelinkfoundation.org

RHODE ISLAND

New England Organ Bank

60 First Avenue

Waltham, MA 02451

Phone: (617) 244-8000

Fax: (617) 244-8755

www.neob.org

SOUTH CAROLINA

LifePoint

3950 Faber Place Drive

Charleston, SC 29405

Phone: (843) 763–7755

Fax: (843) 763–6393

www.lifepoint-sc.org

LifeLink of Georgia

2875 Northwoods Parkway

Norcross, GA 30071

(770) 225-5465

(800) 544-6667

www.lifelinkfoundation.org

SOUTH DAKOTA

LifeSource Organ and Tissue Donation

2225 West River Road North Minneapolis, MN 55411

Phone: (612) 800-6100

Fax: (612) 800-63311

www.life-source.org

TENNESSEE

Tennessee Donor Services

1600 Hayes Street, Suite 300

Nashville, TN 37203

Phone: (865) 588-1031

Fax: (865) 588-5903

tds.dcids.org

Mid-South Transplant Foundation, Inc.

8001 Centerview Parkway, Suite 302

Memphis, TN 38018

Phone: (901) 328-4438

Fax: (901) 328-4462

www.midsouthtransplant.org

TEXAS

LifeGift

2510 Westridge Street

Houston, TX 77054

Phone: (713) 523-4438

Fax: (713) 737-8110

www.lifegift.org

Southwest Transplant Alliance

5489 Blair Road

Dallas, TX 75231

Phone: (214) 522-0255

Fax: (214) 522-0430

www.organ.org

Texas Organ Sharing Alliance

8122 Datapoint Drive, Suite 200

San Antonio, TX 78229

Phone: (210) 614-7030

Fax: (210) 614-2129

www.txorgansharing.org

UTAH

Intermountain Donor Services

230 South 500 East, Suite 290

Salt Lake City, UT 84102

Phone: (801) 521-1755

Fax: (801) 364-8815

www.idslife.org

VERMONT

Center for Donation & Transplant

Albany Medical Center

218 Great Oaks Boulevard

Albany, NY 12203

Phone: (518) 262-5606

Fax: (518) 262-5427

www.cdtny.org

New England Organ Bank

60 First Avenue

Waltham, MA 02451

Phone: (617) 244-8000

Fax: (617) 244-8755

www.neob.org

VIRGINIA

LifeNet Health

1864 Concert Drive

Virginia Beach, VA 23453

Phone: (800) 847-7831

Fax: (757) 227-4690

www.lifenethealth.org

Washington Regional Transplant Community

7619 Little River Turnpike, Suite 900

Annandale, VA 22002

Phone: (703) 641-0100

Fax: (703) 658-0711

www.beadonor.org

Tennessee Donor Services

1600 Hayes Street, Suite 300

Nashville, TN 37203

Phone: (865) 588-1031

Fax: (865) 588-5903

tds.dcids.org

Carolina Donor Services

909 East Arlington Boulevard

Greenville, NC 27858

Phone: (252) 757-0090

Fax: (252) 757-0708

www.carolinadonorservices.org

WASHINGTON

LifeCenter Northwest

3650 131st Avenue SE, Suite 200

Bellevue, WA 98006

Phone: (425) 201-6563

Fax: (425) 688-7641

www.lcnw.org

Pacific Northwest Transplant Bank

2611 SW 3rd Avenue, Suite 320

Portland, OR 97201

Phone: (503) 494-5560

Fax: (503) 494-4725

www.pntb.org

WEST VIRGINIA

Center for Organ Recovery & Education

RIDC Park, 204 Sigma Drive

Pittsburgh, PA 15238

Phone: (412) 963-3550

Fax: (412) 963-3564

www.core.org

Kentucky Organ Donor Affiliates

10160 Linn Station Road

Louisville, KY 40223

Phone: (502) 581-9511

Fax: (502) 589-5157

www.kyorgandonor.org

LifeLine of Ohio

770 Kinnear Road, Suite 200

Columbus, OH 43212

Phone: (614) 291-5667

Fax: (614) 291-0660

www.lifelineofohio.org

LifeNet Health

1864 Concert Drive

Virginia Beach, VA 23453

Phone: (800) 847-7831

Fax: (757) 227-4690

www.lifenethealth.org

WISCONSIN

UW Organ and Tissue Donation

450 Science Drive, Suite 220

Madison, WI 53711

Phone: (608) 262-3248

Fax: (608) 262-9099

www.uwhealth.org/organ-donation/organ-and-tissue-donation/10868

Wisconsin Donor Network

9000 West Chester Street, Suite 250

Milwaukee, WI 53214

Phone: (414) 937-6999

Fax: (414) 937-6998

www.bcw.edu/bcw/Organ-Tissue-Marrow/index.htm

LifeSource Organ and Tissue Donation

2225 West River Road North Minneapolis, MN 55411

Phone: (612) 800-6100

Fax: (612) 800-6331

www.life-source.org

WYOMING

Donor Alliance

720 South Colorado Boulevard, Suite 800-N Denver, CO 80246

Phone: (303) 329-4747

Fax: (303) 321-1183

www.donoralliance.org

Intermountain Donor Services

230 South 500 East, Suite 290

Salt Lake City, UT 84102

Phone: (801) 521-1755

Fax: (801) 364-8815

www.idslife.org

Outside the USA

V
IRGIN
I
SLANDS

LifeLink of Puerto Rico

Daimler-Chrysler Building, Metro Office Park

Suite 100, Calle 1, #1

Guaynabo, PR 00968-1705

Phone: (787) 277-0300

Fax: (787) 277-0876

www.lifelinkfoundation.org

My sincere gratitude goes out to the following:

Those who brought this book to life through their hard work and passion: Nicole James, Rachel Sussman, and Terra Chalberg of Chalberg & Sussman; Mark James; Elizabeth Stein; Luke Dempsey, Suzanne Wickham, Kim Dayman, and Adrian Morgan at HarperOne, and Mary Ann Petyak at HarperCollins; Dan Gerstein; and Professor Joseph Graf.

The medical staff who handled our challenging situation with professionalism, kindness, and grace under pressure: John Maddox; Harvey Stern; Ahmet Baschat; Christopher Harman; Alfred Khoury; Samer Cheaib; Stephen Kennedy; Kelly Gallo; Philip Brooks; Brandy Celnicker; Becky Taylor; the team from Capital Caring, especially Cindi Carney; and Metropolitan Funeral Service, especially Karen Brendle.

The entire team at WRTC, especially Becky Hill, Lisa A. Colaianni, Maureen M. Balderston, Immanuel Rasool, Karen Haase, Debra Goldstein, Lori Brigham, Carlos Fernandez-Bueno, Elizabeth Turner, Rudy Murray, Dave Destefano, Kimberly Woodard, Connie Marroquin, and Matthew Niles.

The entire team at Old Dominion Eye Foundation, especially Bill Proctor, Christina Jenkins, Jennifer Payton, and David Taylor.

The entire team at NDRI, especially Bill Leinweber, Jeffrey Thomas, Mike Salvatore, Bernadette Mestichelli, and Kerri Harvey.

The entire team at Massachusetts Eye and Ear/Schepens Eye Research Institute, especially Elizabeth Mason, Carolyn Bellefeuille, James Zieske, Andrius Kazlauskas, Patricia D'Amore, John Fernandez, Mary Leach, and Jennifer Street.

The entire team at Duke Center for Human Genetics, especially
Heidi Cope, Simon Gregory, Allison Ashley-Koch, Deidre Krupp, and Karen Soldano.

The entire team at Cytonet, especially Mark Johnston, Sonya Meheux, and Kyle Kinsey.

The entire team at the University of Pennsylvania Genetics Lab, especially Arupa Ganguly, Karen Kreeger, Jennifer Richards-Yutz, and Jessica Ebrahimzadeh.

To those who served as invaluable sources of information, facts, ideas, and edits: Misha Angrist, the Conkel family, the McGinley and Cates families, Scotty Bolleter, Sue Scott, Christian Hinrichs, Mara ans Sharon Cray, Chris Mason, Albert Wu, Sarah Grays, Sam Sternberg, Laura Siminoff, Rebecca Cummings-Suppi, Carol Weil, Keith Meatto, Jeremy Wrubel, Veronica Fernandez, Alex Ampadu, Jackie Lue Raia, Alex Solomon, James Selby Jr., Veena Chowdhan and Abbas Syed, Anthony DiMaria, Amanda Bisnauth-Thomas, Matt Might, Sukru Emre, Michael Vitez, Ronda Horstman, Gregory Grossman, Hilary Czarda, Gina Dunne-Smith, and Jerry Vannetta.

Influences, contributors to the story, and help along the way: Houeida Saad, Monika and Anouk Jaquier and the entire Anencephaly.info Facebook Group community, Allison and Faith Andrews, Cyndi and Morgan Barnett, Tania Ponomarenko, Adam Foster, Jay and Clarice Gibson, Ozan Williams, Azian Zain, Anna Whiston-Donaldson, Sophia Smith, Emily Berman, Tony Zwerdling and Ginger Vowell, Deb Weisshaar, Min Tak, Jane Jamieson, and Caitriona Palmer.

The entire AATB staff, especially Frank Wilton, Scott Brubaker, Jenny Chatman, and Veronica Escalona.

To those who donated the blood and blood products that I received during childbirth (Inova Blood Bank Donor IDs #: W0B9810002415, W089810002346, W089810602156, W089810201081, W083210000091, W089810602001, and W089809453744), thank you for donating the blood that saved my life. I hope to meet you all and thank you in person.

My amazing family and friends who endured it all with us, especially Suzanne Rydel and the entire Hughes family, Mark and Jennifer Walpole, Ethan Walpole, James and Cathy Walpole and the entire
Walpole family, Bob Rydel
²
and family, Pauline and Eddie Gray and family, Julia and Garry Mountford, Susan Pollack, and Melanie and Chris Parks.

My children, Callum and Jocelyn. I hope you can always feel me hugging you.

And the other person who experienced this with me, my husband, Ross. I'm so glad to have you by my side.