Zoe Rose Diez is the happiest 9-month old baby you will meet. Her huge smile and bright eyes light up every room! She is curious, active, social, adorable, and fearless. Zoe means "life" in Greek and she could not be more full of love and life.
Zoe Rose was born on July 22, 2016, perfect in every way. Her first month was uneventful as she met all of her milestones and was an easy-going, happy, and healthy baby who brought immense joy to her mom Olivia, her dad Jim, and her big sister Eliza Jane.
At Zoe's one-month check-up, Olivia mentioned to the pediatrician that she noticed some tiny red petechia (spots) on Zoe's skin. The pediatrician ordered blood work to rule out any potential problems. That same evening the Diez family received a life-altering phone call. They were to take Zoe to the Emergency Room immediately. Her platelet count was dangerously low.
Platelets are a very important part of the blood in the body. They’re what help your blood clot and help stop bleeding when you’re hurt. The average human has between 150,000-450,000 platelets in their blood at any given time. Zoe had around 8,000.
After several days in the hospital, a bone marrow biopsy, numerous blood tests, platelet transfusions, and several weeks of monitoring and waiting, Zoe was eventually diagnosed with Congenital Amegakaryocytic Thrombocytopenia (CAMT) - an extremely rare genetic blood disorder affecting her body's ability to produce platelets. There are fewer than 100 cases of this disorder on record. Left untreated, CAMT would cause "bone marrow failure" within the first few years of life.
The only cure for this disorder is a Bone Marrow Transplant (BMT). The details of a BMT aren't for the faint of heart - Zoe (10-months old) will need a central line surgically inserted above her heart to intravenously draw blood and receive medication. After that she will receive 7 days of chemotherapy to kill off her existing bone marrow as well as a long list of immunosuppressant drugs with potential side effects. It will require a long hospital stay with isolation from friends, family, and the big sister she adores, and further isolation at home as her new immune system strengthens.
In the midst of this overwhelming news, the Diez family received a tender mercy -her big sister Eliza Jane is a 10/10 match and does not carry the gene mutation responsible for CAMT - making her the perfect bone marrow donor for Zoe's BMT. Yay Eliza!
The Diez family is also fortunate to live close to one of the country's best pediatric bone marrow transplant centers - Rady Children's Hospital, and this is where Zoe will receive treatment and reside for the next couple of months.
Zoe and Olivia will check in to Rady Children's Hospital on May 15. Brave big sister, 2-year old Eliza Jane, will come in the following week to have her bone marrow cells extracted in a procedure that should last under an hour and a hospital stay that should last one night. Eliza's bone marrow cells will be transferred to Zoe's bloodstream later that day.
Zoe, along with her mom, Olivia, will be isolated in a hospital room for the next 6-8 weeks, as Zoe's risk for infection is extremely high while her body adjusts to the new cells.
When Zoe is discharged from the hospital, she will then need to be isolated at home for another 4-6 months. This means that she will not be able to be around the neighborhood children she is used to seeing, people outside her immediate family, or public places until she's in the clear.
For those of you that know Olivia and Jim, you know that they are your best friends, have the hugest hearts, and would drop everything to help a friend in need. And if you are fortunate enough to know Eliza Jane and Zoe Rose, well then nothing needs to be said. They are simply amazing baby girls! They are so sweet and so beautiful! These girls are so lucky to have Olivia and Jim as parents.
The Diez family first and foremost needs your prayers, well wishes, love, good vibes, positive thoughts, and healing energy sent their way. They are beyond grateful to all those who have already reached out and volunteered assistance during this time. Thank you everyone!
Many people who know and love this family have asked how they can help if they live far away or can't drop off a meal or offer to babysit Eliza. Another way to help the Diez family during this time is to make a donation.
The Diez family is facing multiple adversities in the midst of their most important concern - the health of their baby girl Zoe. Medical bills are mounting, work is missed due to medical appointments and hospital stays, full time childcare is required for Eliza Jane, as well as additional costs associated with moving into and residing in a hospital for an extended time. All donations will go directly toward their medical and child care costs, and will help the Diez family focus on what's most important at this time, helping their baby Zoe fight for her life.
For updates on Zoe's medical journey, please visit https://www.caringbridge.org/visit/zoerosediez