Abbi is in desperate need of a miracle. Please join us in prayer and help us provide treatment for her rare, complicated medical condtion. She is the only known person on the planet to ever face this battle. She has received 6 rounds of Tcells since January of this year (see her story below leading up to then). At this point, we are being told that there is nothing else that can be done for our beautiful daughter. She just turned 16 one month ago today and has yet to be able to celebrate this special milestone as she has been much to ill to go home. We cannot stop fighting for her. We are fasting and praying for the miracle of healing to give Abbi life. We are begging God to provide answers and help to save our child. Please join us in her fight. Thank you
A Battle Beyond Imagination
Abbi was diagnosed with AML and CNS Leukemia at just 5 months old. She was able to achieve remission through high dose chemotherapy, along with several actual miracles during her first year of life. The toxicity of treatment caused Abbi to be diagnosed with cardiomyopathy and pulmonary hypertension. She was treated with medications and watched very closely for several years. Abbi’s heart went into failure and she received a heart transplant at 13 years old. She woke up from surgery on Valentine’s Day with the truest gift of love that one could ever receive, the gift of hope from her donor. We are forever grateful to the unknown person who chose to help us and think of them and their family every single day.
Abbi has had several bumps along the way as solid organ transplant requires an immense amount of timed medications, doctor visits, and procedures for the rest of your life. She has had a couple of serious infections because of simple things that can turn into major problems in those who have weakened immune systems. It all becomes a tedious balance of immune suppression to keep her heart from having rejection and maintaining normal lab levels so as not to become toxic and harm your other organs. On Abbi's 15th birthday she received the news of another issue in her medical journey. During her heart Cath, it was discovered that her donor had their own undiagnosed birth defect. This was a first for pediatric medical history. Abbi is being treated for this with additional medications as it is our responsibility and privilege to care for her donors heart just as we did for Abbi’s own. At some point we may need to revisit the issues depending on the response from the current treatment.
After that same Cath in August, Abbi began having severe stomach and side pain when she stood or walked. She could no longer eat or drink without horrible pain and started losing weight very quickly. Many weeks of testing, doctors visits, and frustration over not being able to figure out what was happening inside her little body came to a crashing halt in October when an X-ray showed a grapefruit size cyst that needed to be removed. I rushed Abbi to the ER for what we thought would be the surgery to remove this cyst and finally relieve her pain. However, once there and preparing for the procedure, CT imaging found a much bigger problem than we suspected. Abbi’s scans revealed multiple tumors in her liver and spleen. Abbi was diagnosed with a very rare disease called EBV SMT. Only 30 people on this planet have ever had this diagnosis prior to Abbi so the facts, treatment, and medical research are very limited. We are very fortunate to have an amazing team of doctors at LeBonheur Children’s Hospital Heart Institute and at St. Jude Children’s Research Hospital who have worked very hard to help us come up with treatment options in her complicated medical situation. Abbi began chemo but the tumors have continued to grow, multiple, and spread. She has just started the first treatment here at St. Jude of TCell transplants in hopes of a miracle to eradicate this disease from her body. We are in the midst of the unknown. Please pray for Abbi. Please pray that this is the miracle that God had waiting for her. Please pray that her body will be healed completely of this virus and all the havoc it has caused with absolutely no adverse side effects now or ever, and that her heart will continue to serve her flawlessly. Please pray for her strength and courage, as well as for her siblings and family as this takes a toll on everyone. Please pray that Abbi will be healthy and able to finally enjoy being a teenager now, and she will hold her grandchildren in the future. Please, please pray for our daughter.