Family Spotlight

Meet Treyton ... A COTA Father’s Day Miracle

The month of June is full of excitement -- summer break, vacations and a special day to celebrate Dads. Father’s Day has become a very special holiday for two central Illinois parents. They experienced a miracle when Treyton Miller received a portion of his dad’s liver … and a second chance at life.

Within days of Treyton’s birth on August 31, 2006, his parents, Shannon and Tom, knew something was very wrong. Just seven-days-old, Treyton was sent to a pediatric specialty hospital where he was admitted because of a dangerously high bilirubin level. He underwent two complete exchange blood transfusions to lower the level, but they were unsuccessful. During this hospitalization, doctors discovered Treyton lacked bile ducts and a gall bladder, and the tiny baby was diagnosed with biliary atresia -- a fatal disease that can only be treated with a liver transplant.

In November 2006, Shannon and Tom traveled north to Children’s Memorial Hospital in Chicago, Illinois, and by January 2007 his name was added to the national organ waiting list. At the same time, tests also revealed that Daddy Tom could be Treyton’s living donor. But how could they afford the surgery, especially when they were so far away from home?

It was during these days they family reached out to the Children’s Organ Transplant Association (COTA). “COTA was simply amazing. We were so worried because we would likely be giving up two incomes to care for our son, and we wondered how we would pay our bills and care for Treyton’s older sister. With COTA standing beside us, people who we didn’t even know stepped up to help meet our need,” said Shannon.

“With COTA we knew that financially we were going to be OK. That gave us incredible hope. Without COTA, we would have drowned in bills. Through our friends and family, COTA helped us help ourselves,” said Tom.

Treyton and Tom’s journey to transplant was not easy. In early February 2007, Treyton got very sick and stopped eating and growing. The living donor transplant was initially scheduled for March 14th but Treyton was too ill and they were sent home. The transplant was then scheduled for April 11th but Tom had the flu. Then it was rescheduled for May 2nd but Treyton was ill. But baby Treyton was admitted to Children’s Memorial until May 18, 2007, the day of Treyton and Tom’s living donor transplant. Transplant day was actually a miracle in itself as Tom’s transplant team performed his procedure at Northwestern Memorial Hospital in Chicago while Treyton’s transplant took place on the other side of the city at Children’s Memorial Hospital.

“Treyton’s transplant, with his dad being his living donor, was a true miracle. With COTA’s help, our whole church, and most of our city, was thinking about, and praying for, this transplant. COTA connected the community to our little boy, and that connection helped make a miracle,” said Shannon.

Treyton was discharged from the hospital just 12 days later, while Tom left his hospital four days after the surgery. Since that time both Miller men have done well. Treyton has had no complications with his new liver. According to his dad, today Treyton is 100% normal … a toddler who speaks fluently and plays very hard.

Truly the best Father’s Day gift.

Please visit www.cota.org and click on ‘Find a COTA Family’ if you would like to help a COTA family, like Treyton's, with ongoing transplant-related expenses.

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Family Resources

Transplant Patients and Pets

These recommendations regarding transplant patients and pets were originally made for bone marrow transplant patients, but they also may be useful for other transplant patients. Although this article focuses on how to protect transplant patients from pet-related diseases, many groups support the health benefits
of pets.

Keep Clean!
Wash your hands thoroughly with running water and soap after handling animals and their feces. If possible, the transplant patient should avoid direct contact with animal feces. Adults should supervise the hand washing of children.

Caring for Your Pet
If your pet is ill, seek veterinary care as soon as possible. Any cat or dog that has diarrhea should be checked by a veterinarian for infection with Cryptosporidium, Giardia, Salmonella, and Campylobacter. Transplant patients should stay away from sick pets.

• Caring for Birds: Bird cage linings should be cleaned daily. Wear gloves whenever handling items contaminated with bird droppings. Routine screening of healthy birds for zoonotic diseases is not recommended.
• Caring for Fish: The transplant patient should avoid cleaning fish tanks -- it should be done by a family member or friend. If this task cannot be avoided, the transplant patient should wear disposable gloves during such activities. Hands should be washed thoroughly with running water and soap afterwards.
• Caring for Cats: If your family has a cat, try to have someone other than the transplant patient clean out litter on a regular (daily) basis. Do not place litter boxes in kitchens, dining rooms or other areas where food is prepared and eaten. Keep your cat indoors. Avoid handling stray cats. Pet cats do not need to be tested for toxoplasmosis.

Feeding Your Pet
Just like people, pets can get diseases from eating contaminated food. By protecting your pet from food borne diseases, you can protect your transplant patient’s health as well. Pets should be fed only high-quality commercial pet foods. If eggs, poultry, or meat products are given to your pet as supplements, they should be well-cooked. Any dairy products given to your pets should be pasteurized. Additionally, pets should be prevented from drinking toilet bowl water and from having access to garbage. Do not let your pet scavenge for food, hunt or eat other animals' feces.

Getting a New Pet
When getting a new pet, avoid animals that are ill, stray or young (cats and dogs less than six months old). These animals are more likely to carry diseases that can make your transplant patient ill.

Animals to Avoid
The following animals are considered high-risk animals for immune-compromised people (including transplant patients):

• Reptiles including lizards, snakes and turtles.
• Baby chicks and ducklings.
• Exotic pets including monkeys.
• Wild animals. Do not adopt wild animals as pets or bring them into your home. Contact with these animals and their environments should be avoided by people with compromised immune systems. If you do touch these animals or their environment (their food or cage, for example), wash your hands thoroughly with running water and soap.
• Farm animals. Transplant patients should be cautious when visiting farms and when in contact with farm animals, including animals at petting zoos and fairs. Make sure the transplant patient’s hands are thoroughly washed after any contact.

Source: U.S. Department of Health and Human Services

For more information about Transplant Family Resources, please or visit www.cota.org and click on “Family Resources”.

Astellas Pharma Patient Assistance Programs

COTA’s team of professionals knows it is very important for our transplant families to be aware of resources that can help with transplant medication costs. There are programs available to ease the financial burden -- like the program highlighted below.

As part of their commitment to patient care, Astellas Pharma US, Inc., offers patient assistance programs to help transplant patients and families save on medication costs every month -- including a rebate card (value card).

To find out if you are eligible, call the value card support line at 1-866-790-7659 or visit www.transplantmedsavings.com (8:00 am – 8:00 pm EST Monday – Friday).

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COTA Family News

Reimbursement Reminders

COTA can assist with many transplant-related medical and non-medical expenses. We want the reimbursement process to be as smooth as possible for all our families.

Here are a few quick steps to take when you have a COTA reimbursement request (a request for funds to re-pay expenses you have already paid):

• Separate all receipts in two categories: medical and non-medical.
• Tape original, itemized receipts to blank pages. Please do not overlap the receipts. Appointment verifications can be included with the non-medical receipts.
• Items that are not transplant-related are not reimbursable. If any receipt includes something not transplant-related, please mark or highlight that item and deduct that expense from the receipt total.
• Write the category and the total for that page at the bottom of each page.
• Complete the Reimbursement to the Family Authorization Form.
• Make copies for your records.
• Send original materials to COTA using a business reply envelope. Please call COTA if you need business reply (postage paid) envelopes.

Please call COTA at 800.366.2682 or email FamilyInfo@cota.org to update your contact information or to ask questions about the reimbursement process. We enjoy hearing from our families!

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Management of the Funds Raised
The Children’s Organ Transplant Association does not charge for its services, and provides families and donors the assurance that funds will be used appropriately. COTA’s program is flexible -- COTA assists families regardless of their need or the type of support they require.

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