Hello, my name is Teresa! Some of you might follow us via our Facebook page, Our Little Taste of Heaven, but for those who are just meeting us, we’re a family of seven. Our daughter, Emma, was born with a genetic disorder called Fanconi anemia (FA), which causes bone marrow failure, MDS, or leukemia, as well as different types of cancers.

FA breaks down into four main “life phases:”

1- Healthy Phase (not yet sick)

2- Blood Disorder Phase (life-threatening blood disorder)

3- Bucket List Phase (return to health)

4- Cancer & Life-expectancy Phase (20-30 years of age)

When Emma was 7 years old, she entered phase 2. We wanted to get her to phase 3 as quickly as possible, already knowing that—barring some huge medical advancement—her life would be shorter than others. But that’s not what happened.

Severe bone marrow failure (aplastic anemia), transfusions, three years of androgens, a bone marrow transplant, years of infusions, severe mucositis, a virus-driven lymphoma, a brain bleed, lungs filling with fluid, experimental t-cell therapy, virus-driven kidney disorder, an eye disease caused by GvHD, an abdominal mass—and more—are things she experienced throughout this phase.

But the thing that took up far too much of her life was that when she had her bone marrow transplant, she essentially traded one blood disorder out for another. Instead of bone marrow failure, she now had an AIDS-like immune system (same dysfunction, different cause). This meant that the doctor-ordered restrictions lasted for much longer than the one year that we expected.

It also means that she was in Phase 2 for nine years before she finally made it to Phase 3.

Just for the pandemic to hit six months later, taking that freedom away again. And, as we waited patiently through that—buying an RV and trying to get out and have adventures that way—a severe gut issue hit, unexpectedly, after an illness, taking away her ability to eat more than 300-800 calories a day. Her gut wouldn’t move things along properly anymore, which turned into an all consuming condition, taking up her days.

It would take nearly two years to figure out a solution to this, which, as of just a few months ago, we finally did. She’s now, unexpectedly, back to a functional state, where this condition is more of a nuisance, now, versus being an all-consuming, life-threatening condition.

Which means, we finally made it to that Bucket List phase. Only she’s also in the age range for the cancer phase now. So, there’s pressure to get her out doing things and marking things off of her bucket list, while she has health and ability to do so.

And, while this is her portion of the story, there’s also the story of her amazing siblings, who, because of them and their willingness to protect her over the years—by being so cautious, not doing all the things that everyone else gets to do, knowing that their sister’s immune system, for so long, couldn’t handle illnesses—they are a big reason why their sister is here today. They gave up a lot of things in their own lives in order to do that, all while also riding that emotional rollercoaster of watching her go through all of these things.

So, after all of that effort from everyone, there’s a big need for a time of healing as a family. To sit in that place where we finally crossed the finish line and can finally rest. Where we can go experience things together, as a full & complete family, making memories that can last a lifetime.

Any money donated will go directly to a “bucket list” account, dedicated solely to this, where the funds will be used for our family to go to events or go on trips to mark off Emma’s bucket list. I don’t know how much money we actually need, and our hope is that our Etsy shops will eventually bring in the money that can fund this (as well as help cover medical bills and offer an income to those that work there, like Emma), but, in between now and then, any donation would be helpful.

Thank you in advance!