Family Spotlight

A COTA Family is Celebrating the Ultimate Gift … the Gift of Life

December 1999 was a time of great joy and great stress for the Copeland family of Colorado.  Deb Copeland delivered twin boys on December 2nd, one of whom had been diagnosed in utero with a congenital heart defect.  Baby Ben was healthy, but Baby Drew was not.  Drew was diagnosed with Double Outlet Right Ventricle Mitral Atresia, which meant the pumping chamber of his tiny heart was malformed.  Drew would need a heart transplant to survive.

Throughout his early years, Drew survived three open heart surgeries and numerous heart catherizations.  However, in July 2009 Deb and John Copeland were told that Drew’s heart was failing.  During these days of fear and stress, the Copeland family reached out to the Children’s Organ Transplant Association (COTA) for guidance and support.

According to John and Deb, “COTA provided hope through all of the support we received while waiting for a new heart for Drew.  The support came in the form of kind words, financial assistance, cards and prayers.  COTA meant we were not alone during the most intense and painful time in our life.  The immense love we felt was like a life boat that cushioned the stress and pain we were experiencing.”

The transplant team at The Children’s Hospital in Aurora, Colorado, placed Drew on the organ waiting list.  After months of prayers, the Copeland family received the call on December 21, 2009.  By early the next morning, Drew was in surgery receiving his new heart … and his second chance at life. 

“I wept when our transplant coordinator told me the new heart was beating in his little body.  Gratitude surged through my soul.  Praise and thanksgiving were on my lips during this holiday time, and our prayers spilled over to our donor family,” Deb remembers.

This December will be Drew’s two-year transplant anniversary. 

“Receiving a heart at the holidays was an amazing miracle.  Before the transplant, Drew couldn’t run down the stairs and now he runs around the baseball diamond.  He loves to feel winded because he trusts his new heart that is now allowing him to be a little boy … what a miracle,” said Deb and John.

The holidays will be lively this year for the Copeland family, and undoubtedly Deb and John will welcome the chaos.

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Family Resources

Message for Caregivers

Your role as a caregiver can become as frightening as the initial diagnosis.  The journey can be a difficult when traveled alone; however, it does not have to be that hard and you do not have to travel the road alone.

Believe In Yourself:  It is important to maintain a positive attitude by recognizing your strengths and limitations.  Believing in yourself and recognizing your strengths and limitations will go a long way in your ability to set goals and boundaries for yourself and for your loved one.

Protect Your Health:  It is critically important to maintain your physical and emotional health and well being.  If you do not, who will?  Your good health is the greatest gift you can give your loved one and your entire family.

Reach Out For Help:  Reaching out and asking for help is never a sign of weakness rather it demonstrates strength and a keen awareness of your own abilities and sense
of self.

Speak Up For Your Rights:  Arm yourself with vital information regarding your loved one’s diagnosis and treatment options.  Having the proper information is the gold standard in achieving the ability to advocate for your loved one and developing strong self advocacy skills.  By keeping the goal of receiving quality healthcare and making it a priority, you can avoid future medical problems and create a superior quality of life for all involved.

Caregiving Can Be Difficult:  We understand that caregiving requires the constant juggling of work, family life and maintaining our own autonomy.  Without adequate support, information, education and training, we cannot possibly maintain and continually meet the needs of our entire family.

A great resource for more information and support is the National Family Caregivers Association (NFCA).  This group educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age.  NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and
well being.

Go to www.thefamilycaregiver.org to learn more about this organization and the resources they can provide.

Source: NFCA

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COTA Family News

COTA Semi-Annual Statements

In July, COTA’s Family Services team announced that in effort to become more eco-friendly, efficient and to help our families with ease of access to COTA fund balances, a new procedure has been developed for semi-annual statements -- which are provided twice a year at the end of December and the end of June.  Beginning in January 2012, if you would like to receive a statement of activity for the prior six months, you may send an email request to FamilyInfo@cota.org.   By the end of the same month you request the information, a statement will be attached to the reply email.

At any time, the Community Coordinator, parents or adult patient can send an email to BalanceInfo@cota.org to request up-to-date balances of COTA funds.  In the subject
line please type “COTA for (patient name)” and in the body of the email request an account balance.  You will typically receive a response within one business day of receiving
your inquiry.

As always, and especially this time of year when we know money can be tight, we are grateful for the opportunity to help ease the financial burden for our COTA transplant families.  Please call COTA at 800.366.2682 or email us at FamilyInfo@cota.org with any questions or concerns you might have about the reimbursement process. 

Happy Holidays!

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COTA Fast Fact

Flexible Services Available at No Cost
The Children's Organ Transplant Association program is flexible -- COTA assists families regardless of their need or the type of support they require.

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