Thanks to a Heart Transplant … A Pennsylvania Family Will Celebrate

A Very Special Valentine’s Day

February 3, 2010 -- February is typically known for celebrating love … and hearts. For the Wilson family of Butler, Pennsylvania, this month truly will be a celebration of the heart. Four-year-old TJ Wilson is alive, growing and able to celebrate Valentine’s Day this year because of a donor heart he received nearly three years ago.

TJ’s story is one that strikes terror in a parent’s heart. According to Randy and Lori Wilson, TJ was a happy and healthy toddler until one day in June 2007, while being treated for flu-like symptoms, TJ suffered a cardiac arrest … and the Wilson family’s life changed forever. Doctors quickly went to work on the toddler. Randy and Lori watched while doctors tried unsuccessfully to re-establish a heart beat. TJ was placed on a heart/lung bypass machine and the waiting began. Several weeks later they were told TJ had restrictive cardiomyopathy and his only chance for survival was a heart transplant. The medical team at Children’s Hospital of Pittsburgh moved quickly to equip TJ with a Berlin Heart to buy the time needed to find a donor heart.

During these upside-down days, the Wilsons heard about the Children’s Organ Transplant Association (COTA). “COTA gave our family and friends fundraising guidance and structure so they could do something to help us when we were feeling so very helpless,” said Lori.

“At a time when we felt hopeless, COTA empowered our family and friends. So many people wanted to help: COTA turned that desire to help into a fundraising effort that generated much-need financial assistance … and a sense of hope.”

On July 16, 2007, TJ received his new heart, and his second chance at life. TJ was released from the hospital and returned home in August 2007.

However the homecoming was short-lived. TJ was readmitted to the hospital in January 2008 when he was diagnosed with post-transplant lymphoproliferative disorder -- a post-transplant complication caused by the Epstein Barr virus. TJ was very sick again, and his body started to reject his donor heart. After specialized medications and medical intervention, TJ was able to fight off the disease and the rejection. On March 20, 2008, TJ and his mommy came home for a second time.

“TJ’s entire story is a miracle. On a seemingly routine trip to the ER to address possible dehydration from the flu, our healthy toddler nearly died as we watched. Since that evening, we have witnessed miracle after miracle with TJ. Thanks to COTA and his amazing transplant team, we are home and our boy is thriving,” said Randy.

TJ is now gaining weight, growing taller and takes only two medications each day. TJ has no developmental delays, no learning issues, no speech problems and he is able to eat anything he desires. TJ’s story can be read at www.cotafortjw.com.
 

January 7, 2010 -- The Children’s Organ Transplant Association (COTA) began giving hope, and making a miracle, for the 1,400th time. One-year-old Parker Scaife of Menomonee Falls, Wisconsin, is the 1,400th patient to begin work with COTA. Baby Parker needs a kidney transplant to save his life.

Born on November 11, 2008, Parker was diagnosed with End Stage Renal Failure. Parker spent the first 128 days of his life in the Neonatal Intensive Care Unit at Children’s Hospital of Wisconsin in Milwaukee. He must undergo a 12-hour home dialysis treatment, called peritoneal dialysis, every day.

“Parker is a true miracle because the night he was born we were told he wasn’t going to make it,” said Lindsay Scaife, Parker’s mom. “All hope was lost at that point. When he was four-hours-old the doctors told us if we wanted to have him baptized, it would need to be done quickly. We chose an outfit and went to his hospital room to spend our last moments with him. Instead, Parker just kept beating the odds day-by-day. Hope is what kept us going.”

Adding to this family’s hope? Mom Lindsay is a perfect match for Parker and will be his kidney donor. To receive his mother’s kidney, Parker must weigh in at the 10 kilo mark. While he has met that milestone, the small size of his bladder has currently put the transplant on hold. Parker’s bladder has never been filled, meaning that it is less than one quarter the size of a normal baby his age. The family is waiting for an upcoming surgery that will place a tube in his bladder allowing for it to be filled with saline up to five times per day. If all goes well, Parker’s living donor kidney transplant will be in late spring or early summer.

But hope comes with a price tag. The Scaife family represents a majority of Americans -- they have health insurance through their employers; however, their ability to financially support Parker’s medical needs will soon be exceeded. They are concerned about insurance life-time maximums and paying deductibles, co-pays and other expenses, like the expensive medications Parker will require for his lifetime.

Earlier this fall, Dustin and Lindsay Scaife reached out to COTA for help with Parker’s transplant-related expenses; their team of volunteers has been working tirelessly ever since.

Lori Kletzien, Vice President of Milwaukee-based Building Service Inc., serves as Public Relations Coordinator for Parker’s COTA team of 20 community members. According to Lori, “We have raised more than $15,500 to date and we haven’t had a fundraising event yet. Having the ability to use COTA’s website and viral marketing tools has been amazing. Parker’s COTA website (www.COTAforParkerS.com) is trustworthy and people feel very comfortable making online donations. When we started working with COTA, they sent out a press release about Parker’s journey and within 30 minutes of the email being sent by COTA, we were contacted by a local television station that taped an interview and aired it that day,” Kletzien added.

“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Rick Lofgren, President of COTA. “Parker’s story is like many that I hear nationwide … a child who needs a second chance at life, and a community that works toward ensuring never-ending hope becomes a miracle.”

“COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive,” said Lofgren. “The community rallied and raised more than $100,000 in two months’ time. Even though that little boy did not make it to transplant, their efforts were not in vain -- especially when there is a possibility we can help give our 1,400th patient, Parker Scaife, a second chance at life.”

According to Dustin Scaife, “COTA has helped us offer Parker a true second chance at life. With us near our lifetime max on health insurance, it is so comforting to know we are able to focus on Parker and not on how we are going to pay for the bills. Saying ‘Thank you, COTA’ doesn’t seem to be enough.”
 

During a season filled with lists and wishes, the holiday gift one Utah couple hopes for is one often taken for granted: a healthy family. For this family, one wish has already been granted. Now they wait for the ultimate gift … the gift of life.

Last November, Brian and Emily Hoopes received a precious gift in the form of a long-awaited adoption. Their story began on Halloween 2008 when Baby Patrick was born in Michigan. The young Salt Lake City area couple adopted Patrick when he was just one-week-old, bringing him home to Utah a month later. From the outset of the adoption process, Brian and Emily knew Patrick was a very sick infant. They were told the baby only had a few centimeters of small intestine and until he could get an intestinal transplant, Patrick would require constant medical attention.

“Beyond knowing he would need lots of medical care we also knew Patrick’s life had been a series of miracles up until that point. We hoped those miracles would continue and we decided to forge ahead with hope, despite an uncertain future,” said Emily.

Knowing the road ahead would be rocky given Patrick’s diagnosis of short gut syndrome, Brian and Emily joyfully initiated the adoption process and returned to Utah to their large network of family, neighbors and Church of Jesus Christ of Latter-day Saints friends. Their network of acquaintances expanded rapidly to include Patrick’s medical team of gastroenterologists, surgeons, nurses, pharmacists, dieticians, developmental specialists and many more medical professionals. This couple’s dedication and commitment to a tiny infant remained unwavering even as they discovered the harsh realities that laid ahead for each of them.

The specialists at Primary Children’s Hospital in Salt Lake City, Utah, told Emily and Brian they would need to go to Seattle Children’s Hospital, an 840 mile trip, to further investigate the possibility of a life-saving small bowel transplant. They made their first trip to Seattle in early 2009. That trip was successful and Patrick was listed for a small bowel transplant. That’s when the waiting began.

Just to maintain Patrick’s health while he waits for his transplant, the Hoopes’ pay co-pays for every doctor and therapist visit, and for every trip to the hospital emergency department in Salt Lake City. Sometimes Patrick is in the doctor’s office more than once each week. There are also co-pays for his medications; deductibles, and the costs of living at a hospital for a week or more at a time. According to Emily and Brian, the Hoopes family has had to tighten their belt because Emily’s current full-time job is taking care of Patrick.

Intestinal transplants are a fairly new procedure. With Patrick being listed for transplant at Seattle Children’s, Emily and Patrick need to travel to Seattle every three months for evaluations. Each visit involves airfare and food and lodging for at least a couple days. They also pay charges associated with seeing doctors outside of their insurance network. When the transplant call does come and they need to get to Seattle quickly, Emily and Brian may need to charter a $10,000 flight to get Patrick to the hospital within the narrow time frame allowed by the surgical team.

It became very apparent, very quickly, that Brian and Emily Hoopes needed help. Even though the Hoopes’ have health insurance coverage, they soon realized that regardless of how ‘good’ their insurance is, they are facing a huge financial burden -- in addition to the stress of Patrick’s medical care they face on a daily basis. In the midst of these difficult days, Brian and Emily heard about the Children’s Organ Transplant Association (COTA).

“With the amazing assistance that COTA provided, we were able to pull together a group of friends and family who are working together to raise funds for transplant-related expenses, and to raise awareness of the transplant journey our family was facing,” said Emily. Almost immediately, Emily became a regular contributor to Patrick’s website journal at www.COTAforPatrickH.com. And, just as quickly, bloggers got online and started reading, and responding to, this mother’s riveting words of gratitude and hope.

After Patrick’s transplant, he and Emily will need to stay near the hospital in Seattle for about six months. This family will split Brian’s income across two households in two states. Undoubtedly, their out-of-pocket insurance costs will skyrocket and they will have co-pays for bi-weekly biopsies; for anti-rejection medications, and for IV nutrition, feeding therapy and home nursing.

“When I consider the price of Patrick’s transplant journey, it is overwhelming. However, COTA has given us hope, making it seem that one more miracle is possible,” said Emily.

Emily continued, “We have witnessed many little miracles since we found COTA. Family, friends and neighbors have come together in amazing ways. Strangers in our community have reached out to us. Every little miracle gives us hope that a bigger miracle -- a transplant -- is in our future. We’ve always considered Patrick’s life a gift. We feel privileged to be his parents. Some may think we gave our baby a gift by adopting him, but the reality is that he is giving us the ultimate gift by being our son.”

The Hoopes family is getting ready for the holidays. They are grateful for the ongoing support their COTA team continues to provide; they are grateful for their COTA website Journal readers and Guestbook visitors, and mostly, they are grateful for the selfless gift an anonymous family will soon give to Patrick … the gift of life.

Truly the best holiday gift that can be given.
 

November 16, 2009 -- The Children’s Organ Transplant Association (COTA) has announced that 80 COTA patients were successfully transplanted during its 2009 fiscal year that ended June 30th. That brings the total number of COTA patients transplanted to more than 950 in the 23 years COTA has served transplant-needy families.

“COTA’s unwavering commitment to giving hope and making miracles for each patient family is underscored by the organization’s nearly 150,000 volunteers and contributors who, during the past 23 years, have generously donated their time and their money to COTA,” said Rick Lofgren, COTA President and CEO. “These volunteers and contributors are indeed heroes; they are our Miracle Makers.”

An important benchmark for any non-profit organization is the percent of expenditures used for program-related activities. In the past year, COTA reported that 89% of COTA’s operational expenses were directed toward patient care and organ, tissue and marrow donor education program activities.

“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Scott Price, COTA’s Chairman of the Board. “On behalf of COTA’s Board of Directors, it is my pleasure to report that more than $3.7 million was raised to help meet transplant-related expenses of COTA patients during fiscal year 2009. COTA’s Board of Directors is committed to ensuring that every dollar donated for our patients is used for patient care.”

Over the past 23 years, COTA has become the premier organization providing fundraising assistance to families facing a life-saving transplant by assisting some 1,400 patients. Families from throughout the country, representing every ethnic, economic, religious and social background, have worked with COTA. Their volunteers and supporters have donated nearly $55 million to assist with transplant-related expenses.

More than two decades ago, when COTA was founded, most donations were made through cash or checks. In fiscal year 2009, COTA’s website (www.cota.org) became the organization’s fastest growing method of raising funds with nearly $600,000 in online donations.

Since its founding in 1986, two of COTA’s hallmarks are that patients are not charged for services and every dollar contributed in honor, or in memory, of COTA patients is used for transplant-related expenses.

“In addition, COTA augments the funds our volunteers raise by providing a challenge grant of up to $10,000,” said Price. “This COTA program has distributed more than $2,600,000 to COTA fundraising campaigns since 2000.”

“COTA was founded in 1986 when one child from Bloomington, Indiana, needed a liver transplant to survive. The local community rallied around this child’s family and raised more than $100,000 in two months’ time. Sadly, that little boy died before a liver became available, but their efforts were not in vain. I expect we will be celebrating another milestone when we announce the name of our 1,400th patient in the coming weeks,” said Lofgren.

Along the way COTA’s team of professionals and these families have shared tears, conquered huge obstacles, hoped, and together, have celebrated more than two decades worth of miracles.