The Children's Organ Transplant Association will never request personal or banking information via email from patient families, volunteers or supporters. If you receive any requests for this information and suspect
it may be fraudulent, please contact COTA at 800.366.2682. COTA does not sell, share, rent or otherwise make available any personal or financial information.
Family Spotlight
Meet Amber Asboe … A COTA Miracle
The Asboes will be forever grateful to the family who chose to donate their child’s organs -- and save Amber’s life. Precious Amber would not be the happy toddler she is today without the generosity and love of her donor family.
Amber’s first year of life was normal -- full of love and developmental milestones. However just days before her first birthday, Amber’s life changed dramatically when she became sick while attending a family party at a local restaurant. Amber’s mom, Christy, a nurse, knew instantly something was very wrong. After a few days of hospital testing, Amber was diagnosed with pulmonary vein stenosis, an extremely rare condition with no cure. Christy and Ron were told Amber’s only chance for survival was a double lung transplant.
During the month of October 2007, Ron and Christy travelled 2,500 miles to St. Louis Children’s Hospital for Amber’s transplant evaluation. On November 1st she was officially listed for a double lung transplant. It was during these devastating days that Ron and Christy learned about the Children’s Organ Transplant Association (COTA).
“Upon hearing Amber’s diagnosis, we were devastated. But after we heard about COTA, I started to relax. With COTA’s support, we were able to keep our home while we were away at transplant. Suddenly I knew there was hope for our future; I didn’t need to fear my entire world falling apart. With COTA, I knew we could make it through,” said Amber’s mom, Christy.
“COTA helped our family, friends and community come together to raise funds for transplant-related expenses. We were a hard-working, self-sufficient young family when this tragedy turned our lives upside down. COTA was there for us every step of the way and their fundraising guidance and support allowed me to concentrate on Amber’s needs and not to worry about money.”
Amber’s second chance at life came on Christmas Eve 2007. After a difficult post-transplant recovery, Amber and her parents are back at home in Oregon, living life to the fullest.
“Amber is a miracle … our miracle. At one time post-transplant, we were told she might be in a vegetative state for the rest of her life. Today Amber is happy and playful and full of smiles. Every breath she takes is a miracle,” said Christy and Ron.
Amber’s ear-to-ear grin is an indication that she knows she got the ultimate gift -- the gift of life.
Please visit www.COTAforAmberA.com and leave the Asboe family your
own message of encouragement, or make a donation to help with ongoing transplant-related expenses.
A normal rite of passage for many children is going to summer camp. Summer camp may not seem possible for your post-transplant child or young adult, given his or her specialized medical needs. But you may interested to know that summer camps are available specifically for transplant patients.
Summer camp is a place where kids can learn new skills, make new friends, be self-sufficient and enhance their self-esteem.
Here is a list of some camps that may be appropriate choices for transplant patients listed by state:
Arkansas Camp Aldersgate
Little Rock, Arkansas
For children ages 6 to 16. Offers swimming, canoeing, fishing, nature hikes, cultural arts programming, cookouts and arts and crafts.
Contact Bill Faggard, Medical Camps Coordinator
501.225.1444
arkcamp@aol.com
California Camp Whittle
Big Bear, California
Accepts HD patients, ages 9 to 17, and peritoneal dialysis, post-transplant, and general nephrology patients, 9 to 18. YMCA activities include hiking, crafts, horseback riding and archery. Dialysis campers are main-streamed into the camp population. There is a separate lodge for on-site dialysis.
Contact: Margaret Davis, NKF of Southern California
310.641.8152
Painted Turtle Camp
Santa Monica, California
The Painted Turtle is the sixth addition to Paul Newman's family of ‘Hole in the Wall Gang’ camps for seriously ill children. It is also the only multi-disease camp and family care center of its kind on the West Coast.
www.thepaintedturtle.org/turtle/
Colorado Vacation Kidney Center
Winter Park, Colorado
Hemodialysis treatments for adults and children are available on a year-round basis. Snow Mountain Ranch/YMCA of the Rockies offers horseback riding, hiking, swimming, tennis, miniature golf, white water rafting and fishing. There are also winter sports.
Contact: Shari Southoff, University Hospital
800.578.5432
Florida The Boggy Creek Gang Camp
Eustis, Florida
The camp teaches children to cope better with day-to-day challenges and offers educational and supportive programs to parents, siblings, and other family members. Children learn how to communicate better and to care for themselves while they are enjoying a wide variety of outdoor activities.
Contact: Melanie Bell
407.894.7325
Georgia Camp Independence
Camp Twin Lakes in Rutledge, Georgia
For children age 6 to18. Free to Georgia residents. Offers swimming, sports, horseback riding, arts and crafts, boating, ropes courses and computer classes.
Contact: Tracy Murphy
800.633.2339
Camp Braveheart
Camp Twin Lakes in Rutledge, Georgia
Offered to children ages 7 to 18 years who are affected by heart disease and heart transplant recipients. Activities include rock wall climbing, swimming, boating, ceramics, archery and arts and crafts. Sponsored by Children's Healthcare of Atlanta.
Contact: Cheryl White
800.605.6175
campbraveheart@choa.org
Kentucky The Center for Courageous Kids
Scottsville, Kentucky
Offers camping experiences for children living with chronic or life threatening illnesses.
270.618.2900
www.courageouskids.org
Maine Camp Sunshine
Casco, Maine
This camp offers boating, fishing, games, arts and crafts, professional counseling, workshops and onsite medical support at no charge. Families live in handicapped-accessible cabins.
Contact: Jennifer Cavage
617.355.8047
www.campsunshine.org
Maryland Dragonfly Heart Camp
Chestertown, Maryland
Dragonfly Heart Camp offers children ages 7 to 17 with heart disease and pulmonary hypertension, as well as those who have undergone heart transplant, a one week camping experience that will build strength and confidence, as well as empower, educate and cultivate life-long friendships. Camp is free to all campers with the exception of a non refundable $50 registration fee. Campers are accepted on a first-come basis. Deadline for registration is in May.
443.480.9578
www.dragonflyheartcamp.org
Missouri Camp ChiMer
Excelsior Springs, Missouri
Summer camp for children 9 to 16 years of age who are on dialysis or who have received a transplant. Offers swimming, boating, other outdoor activities and crafts.
Contact: Linda Jones
816.234.3100
Michigan Camp Michitanki (Michigan Transplant Kids)
Oscoda, Michigan
The one-week summer camp, administrated by the University of Michigan Transplant Center, is for children ages 7 to 16 who have received an organ transplant. The camp offers canoeing, sailing, swimming, fishing, arts and crafts, high and low ropes course, basketball, golf, horseback riding, archery, rock climbing wall, knitting and volleyball.
Contact: Vicki Shieck, RN, BSN
734.615.4013
vickys@umich.edu
New York Ruth Carol Gottscho Kidney Camp
Frost Valley, New York
For children ages 7 to 15. Offers horseback riding, swimming, crafts, and climbing for pre-dialysis, continuous ambulatory peritoneal dialysis, continuous cycling peritoneal dialysis, and transplant patients.
Contact: Carole Paterson
845.985.2291, ext. 213
Ohio Miracles for Life Youth Camp
Clarksville, Ohio
Miracles for Life Youth Camp offers youth ages 7 to 17 with tissue or organ transplants a weekend outdoor educational experience that will allow them to be a kid again while helping them build strength, confidence, self-empowerment, network and life-long friendships. Camp Joy holds several medical specific camps year. Campers enjoy swimming, volleyball, tennis, softball, basketball, climbing walls, zip lines, ropes climbs, canoeing, hiking, nature trails and crafts. Camp is free with the exception of a $50 registration fee. Space is limited. Campers are accepted on a first come, first served basis.
Contact: Tom Starr
513.248.4665
www.miraclesforlife.org
Pennsylvania DCI Western Pennsylvania Kidney Kamp
Ligonier, Pennsylvania
For children all ages. Peritoneal dialysis, transplant, pre-dialysis, and hemodialysis. Offers swimming, archery, hockey, crafts, music, day outing to amusement park, adventure course, sports, pool parties and more.
Contact: Joana Bucci, MSW, LSW
724.339.1772
Camp Chihopi Pittsburgh, Pennsylvania
For children ages 7 to 17. Camp Chihopi is a summer camp especially for kids and teenagers who have had liver or intestine transplants.
Contact: Beverly Kosmach-Park
412.692.6115
Camp Jeremy Blue Bell, Pennsylvania
For children ages 6 to 16. Camp Jeremy was inspired by Jeremy Clemens who received a heart transplant at the age of eight. Jeremy's family and Mermaid Country Day Camp wanted to keep Jeremy's spirit of giving alive by offering other transplant recipients an opportunity to enjoy a week of camp free of charge. Offers swimming, water slides and pool slides, tennis courts, golf, miniature golf, basketball, volleyball, tetherball, archery, ceramics, ropes course, climbing wall, playground, game room, arts and crafts, jewelry studio and indoor space for rainy days.
Contact: Megan Fullerton
215.557.8090
Texas Camp for All
Bourton, Texas
For general nephrology, hemodialysis, CAPD and transplant patients ages 6 to 17. Offers swimming, horseback, riding, archery, canoeing, fishing, arts and crafts, bicycling and basketball.
Contact: Marion Johnson, NKF of Southeast Texas
713.952.5499
Camp Rockin' (Reaching Out to Children with Kidney Needs)
Rockport, Texas
Camp Rockin’ meets for one week each summer at Camp Aranzazu for swimming, arts and crafts, kayaking, archery, nature studies, and much more. We provide a week of independence and fun for children with transplants, on hemodialysis, peritoneal dialysis, or with chronic kidney or urologic problems and provide a week of safe respite for their families. The camp is for children 6 to 17 years old.
Contact: Driscoll Children's Kidney Center
361.694.6852
Virginia Camp Holiday Trails
Charlottesville, Virginia
Children ages 7 to 17, hemodialysis, peritoneal dialysis, transplant patients, and children with other health needs. Offers canoeing, camping, hiking, drama, arts and crafts, high and low ropes course, swimming, basketball, tennis and volleyball.
Contact: Tina LaRoche
434.977.3781 or holidaytrails@nexet.net
Washington Camp Colman
Case Inlet, Washington
For CAPD, transplant and CRI patients ages 6 to 9.
Contact: Jane Driscoll, Seattle Children's Hospital
206.526.2524
For more information about Transplant Family Resources, please or visit www.cota.org and click on “Family Resources”.
Ask the Right Questions When It Comes to Your Child’s Medications
Here are some questions to ask your child’s transplant doctor(s). Use these questions to help you discuss your child’s medications, and write down anything you want to be certain you remember.
What is the name and purpose of each medication?
Are generic versions available for any of these medications?
In your opinion, which medications would you choose for my child to take
as generics?
What medications would you prefer that my child take only as the brand
name versions?
Are there any situations when it would be okay for my pharmacist to change
a medication?
What should I do if my insurance company will not cover a brand name medication that my child is prescribed?
Who should I contact if I pick up a prescription on a weekend and discover it is
not what was prescribed?
Here are some questions to ask your pharmacist:
What is the difference in my co-pay for a branded medication versus a
generic medication?
Am I receiving the medication that my doctor prescribed for my child?
Do you have the brand name version of this medication in stock? If not,
can you recommend another pharmacy that might carry it?
Is a co-pay card available to help with the cost of my child’s medication?
If you need further assistance with medication questions, please contact Astellas Reimbursement Services at 800.477.6472 or visit www.astellasreimbursement.com. Further assistance may also be found at the Value Card support line at 866.790.7659.
COTA’s team of professionals knows that bills add up quickly. COTA funds can help with your family’s transplant-related medical bills. COTA offers families two ways to get bills paid:
Submit a receipt from a paid bill. COTA will reimburse you.
Submit an unpaid bill from a service provider. COTA will pay the provider.
You can choose what works best for your family.
If you submit a transplant-related medical bill that you have already paid, please send COTA the original bill showing that insurance has been applied along with verification
of your payment. This verification can be a copy of your cancelled check or an updated statement showing your payment. If the bill does not show insurance has been applied, please include the Explanation of Benefits (EOB) with your submission. All receipts
and other documents should be sent to COTA with the Reimbursement to Family Authorization Form.
If you submit a transplant-related medical bill that has not been paid, please send COTA the original bill showing that insurance has been applied. If the bill does not show insurance has been applied, please include the Explanation of Benefits (EOB) with
your submission. All documents should be sent to COTA with the Payment to Provider Authorization Form. Please do not forget to provide COTA with the address to send
the payment.
Please call COTA at 800.366.2682 or email FamilyInfo@cota.org if you have any questions about the reimbursement or payment process. We would be happy to help and enjoy hearing from our families!
The Children's Organ Transplant Association (COTA) provides: Ongoing Support … Before, During and After the Campaign
Throughout the community fundraising campaign, the Children’s Organ Transplant Association provides printed materials, telephone support, media and publicity resources, training meetings, no-cost websites and web-based fundraising materials. Although the active community fundraising typically lasts less than a year, COTA’s relationship with the family spans the lifetime of the patient.
The Asboes will be forever grateful to the family who chose to donate their child’s organs -- and save Amber’s life. Precious Amber would not be the happy toddler she is today without the generosity and love of her donor family. 
A normal rite of passage for many children is going to summer camp. Summer camp may not seem possible for your post-transplant child or young adult, given his or her specialized medical needs. But you may interested to know that summer camps are available specifically for transplant patients. 
COTA’s team of professionals knows that bills add up quickly. COTA funds can help with your family’s transplant-related medical bills. COTA offers families two ways to get bills paid: 