Updated 5/24/2022

Oh Cattaleya.  Cattaleya is the EPITOMY of strength. Catt was born 10/15/2014 with Recessive Dystrophic Epidermolysis Bullosa. Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB).

There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally.

There is no treatment or cure, but researchers are making tremendous strides in developing therapies. The current standard of care is supportive, which includes daily wound care, pain management, and protective bandaging. For more information on EB, please visit www.debra.org.

On 8/4/2016 Cattaleya had a Bone Marrow Transplant at the University of Minnesota Masonic Children’s Hospital in hopes to defeat the odds of her condition’s mortality, which through genetics we knew, her exact mutation has only been recorded 5 times and all passed under 5 years old.  We decided that we would put all our chips on Catt, and having her here, at almost 8 years old, we SUCCEEDED!!

Unfortunately, almost 6 years port transplant Catt has developed Acute Myeloid Leukemia.  While the first transplant was a success EB-wise, she got Leukemia from her donor. I know how horrible that sounds.  The first question to mind, ‘DON’T THEY TEST THE DONOR FOR THIS?’ The answer is yes. It’s also very possible the donor never develops Leukemia.  The donor has a healthy immune system, capable of fighting these small amounts of Leukemia cells in his body.  Catt, taking so many immune-suppressant drugs to avoid rejection, created a perfect unprotected environment for these cells to thrive in my baby’s body.

So here we are… fighting Leukemia.  Plan is – get this Leukemia into remission and as soon as we do that, we again re-locate to Minneapolis for a second transplant.  Her fight against Leukemia started 5/9/22.  At day 30 we do another bone marrow biopsy to see if the chemo did its job.  If not, we do another 5-week round.

As Cattaleya’s sole provider, I will somehow, some way make it all work.  I don’t care what it takes.  We are restarting fundraising with COTA to at least allow me not to have to worry about the finances of maintaining two households while we ae in Minneapolis.

Thank you all.  My village is small, but MIGHTY!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.