"Please Help Us Save Our Daughter. It's Truly A Matter Of Life Or Death."

Editor's Note: Thank you to the Patch Community for your overwhelming support of the Cummings family as they go through this difficult time. Your response has been so generous that the family is asking that they and the Yale Transplant Center be given time to sort through the massive number of offers that have been made.

Here is a note they sent us Thursday night, May 17th:

A Message from the Cummings Family;

“Many thanks from our family for the wonderful messages, prayers and
actions taken by so many in response to Grace's transplant letter.

We have talked to the Yale Transplant Center and so many people have
responded to our plea, Yale now needs time to further process the
individuals that have been in touch with them to date.

As of right now, we are hopeful that a suitable donor can be found.
Please do not contact the Yale Transplant Center and hold off on
distributing the letter at this time.  We will keep you posted to what's going
on in the process as things can change daily.”

Once again many thanks,
George and Colleen Cummings

********

Original story posted Wednesday, May 16th:

If you live in Madison, or know someone who lives in Madison, or know someone who knows someone who lives in Madison, chances are you may have received an email recently (or five) about a young girl in Madison who needs a liver transplant.

Members of the community are working hard to spread the word because Grace Cummings needs a transplant now and a donor must be found. Her parents are asking people to contact The Yale Transplant Referral Line Coordinator  to see if they might be eligible to become a donor.

This initial call can simply serve as a fact-finding mission with no obligation, or can be an initial screening. Yale will protect the confidentiality and anonymity of all perspective donors. It is important to note that potential donors be between 18-55 years of age, are in good health and have a healthy lifestyle, have blood type O, no history of blood clots and other autoimmune diseases, have a BMI<28, and have active health insurance. Please help us help our daughter. It is truly a matter of life or death.

Thank you, George & Colleen Cummings

Here is the full text of their plea. Send this out to everyone you know. Post it on community bulletin boards. Then, if you meet the medical requirements, make that call to Yale and see if you can help.

It is with fear and trepidation that we write this email. Our daughter, Grace, is listed on the national liver transplant list, but is getting sicker and sicker each and every day. She needs a liver transplant. We are on a desperate mission to find her a live liver donor. Medical science has developed the procedure in which a portion of one person’s healthy liver can replace another person’s diseased liver and both donor and recipient can lead normal lives. The liver is an amazing organ and both sections will quickly grow to full size and functionality. Please help us in getting the word out to your family, friends and colleagues. We know that there are amazing people out there as we have had several people come forward but who are ineligible at this time.

When Grace was born in May, 1997, she was born with a choledochal cyst in the biliary tract of her liver. At 12 days old she had extensive liver surgery to remove the cyst, gall bladder and reroute parts of her intestines. She was closely monitored by the excellent staff at Connecticut Children’s Medical Center (CCMC) taking daily medications and she was in good health until her second birthday (1999) when she developed her first bout of cholangitis, a bacterial infection in her liver. This was treated by a two week hospital stay on an IV of triple antibiotics.

After this episode, Grace continued with her normal activities in school and sports, and her passion for helping the American Liver Foundation. She started a team with her sister Meghan called “Captain Grace and Her Buccaneers” and had a large number of walkers. They collected $36,000 for liver research over the last 10 years. She also made two TV Public Service Announcements for the ALF and was chairperson of the walk on two different occasions. Unfortunately, in 2010, cholangitis came roaring back into her life. She had episodes in April 2010, March 2011, June 2011, and December 2011. Each time, hospital stays of 5-7 days were needed and she came out with a PICC line for IV antibiotics to be administered at home for 30 days.

Obviously, this cut into her school time and activities. Liver diseases are sneaky. Sufferers can appear normal while the disease erodes the liver and biliary tracts causing stress and damage to associated parts of the body. During these years, Grace was able to live an apparently normal life, although recently, fatigue and itching have started to sap her energies. From the Choledochal Cyst and removal, and episodes of cholangitis, Grace presented with a new disease, Sclerosing Cholangitis. She also has evidence of Portal Hypertension and Cirrhosis. She is now being treated by Dr. Pramod Mistry, Pediatric Hepatologist at Yale University and Dr. Sukru Emre, Head of Surgery at Yale Transplantation Center.

The doctors told us Grace needs a new liver now. Cadaver liver allocations are based on a ranking called the MELD (Model End Stage Liver Disease) score. Choledochal cysts and Sclerosing Cholangitis do not mesh well with this standardized system. Although she is quite ill, her MELD score remains low. Doctors told us that by the time her MELD score is high enough to qualify for a cadaver liver, she will be within 72 hours of death. Grace needs a live donor liver transplant now.

We need your help in this next leg of our journey. Please forward this email. We have to get the word out. Our insurance will cover all expenses for being tested, the transplant surgery and recovery time for up to 3 months.

To find out more about being a living donor, individuals can call The Yale Transplant Referral Line Coordinator at 1-866-925-3897. This initial call can simply serve as a fact-finding mission with no obligation, or can be an initial screening. Yale will protect the confidentiality and anonymity of all perspective donors. It is important to note that potential donors be between 18-55 years of age, are in good health and have a healthy lifestyle, have blood type O, no history of blood clots and other autoimmune diseases, have a BMI<28, and have active health insurance. Please help us help our daughter. It is truly a matter of life or death.

Thank you, George & Colleen Cummings

Grace Cummings Graduated Walter C. Polson Middle School (8th grade) 2011
Parents: George and Colleen Cummings

Choledochal cyst and surgery to remove May 1997 Cholangitis May 1999, May 2010, April 2011, June 1011 and December 2011

Diagnosis: Evidence of Cirrhosis and Portal Hypertension (continued to develop slowly throughout the years).

Medications: Ursodiol, 300mg, 3/day Bactrim Superdose antibiotic, 1/day Prevacid, 30mg 3/wk Zinc, 25mg 1/day Multivitamin, 1/day Hydroxyzine Hcl, 25mg, up to 3/day as needed.

Anonymous Thoughts About Grace From Friends:

“Grace is a very special young lady who has been involved in all kinds of youth activities since she was a kid and still remains extremely active today. Her unique personality always shows a positive presence and she prides herself in always making others happy and smiling. As sick as she is, she always puts others in front of herself and makes them feel on top of the world. Her friendship is truly a blessing and simply lights up our lives!”

“...many families can relate to your situation. However, there is one key difference that sets you apart from the rest. That difference is Grace. She has been through everything. It seems that there is nothing in this whole world that she could not outride with her indomitable spirits. As we know, the time has come when Grace needs our help. She is not facing this alone though. She inspires all of us. One time the team was doing hockey sprints at practice. We were all exhausted and on our last sprint, I looked over and saw that Grace was skating next to me. It was obvious that she was tired, as was I, but I saw her put her head down, dig deep and finish Sometimes I am tired, and I feel like I can’t keep going. When this happens, I think of that time on the ice, put my head down and finish what I have started.”

“Grace does not just live; she excels in everything that she does. Grace is a champion in school, in the community and in sports--on the field, ice rink and tennis court. Along with her family, she has been a relentless supporter of the American Liver Foundation, dedicating her time and talents to the pursuit of cures for all types of liver diseases. In Grace's world, it's not all about Grace, rather all about family, friendship and community. Grace approaches all that she does with a keen intellect, kind heart and generous nature. She wears a smile even when she's hurting from a sports injury or a medical procedure. When I think of Grace, the words ‘true grit’ come to mind.”

“In Grace's world, there is no word for quitting. She's a champ, a winner, using all of her gifts everyday in every way. Her illness does not define her nor dampen her dreams. Her illness is a burden that she bears with a spirit and wisdom beyond her years. She knows she has liver disease; yet, she knows what she has to give and gives generously.”

“You'll know Grace by her smile and her passion for life. She inspires just being Grace!”