Desirae's Journey
Donation protected
In July 2014, 7-year-old Desirae spiked a fever of 104. After 10 days of a persisting fever with no signs of breaking and blood in her urine, Desi’s pediatrician advised having blood work done. After several days, the pediatrician suggested seeing a hematologist oncologist at Tufts Medical center in Boston. This was the first unprepared step down Desi’s journey to recovery.
The Desmond family was wrought with anxiety as they waited through several months of labs and tests with no conclusion. In October 2014, Desi showed her family how brave she could be as she had a bone marrow biopsy and aspiration in hopes of finally finding out what was causing her sickness.
On November 17, 2014, the Desmond family received a phone call that would change their lives: Desirae was diagnosed with Faconi anemia.
Fanconi anemia is inherited disease that can lead to bone marrow failure and cancer. Though considered primarily a blood disease, Fanconi anemia may affect all systems of the body. It is a complex and chronic disorder that is psychologically demanding. Fanconi anemia is also a cancer-prone disease affecting patients decades earlier than the general population. With Fanconi anemia, the body cannot repair DNA damage. This means Desirae needs to be careful around everyday things she is exposed to, like the sun’s rays, chemicals in clothes, and even the air around her. Fanconi anemia can also cause kidney failure, growth hormone issues, and gastric abnormalities.
Besides the bruising and low platelets, you would never know that Desirae has this horrible disease. Her doctor monitors her closely, ordering routine blood tests to be done every three months. Through it all, Desirae still smiles vibrantly.
At another abrupt turn in December 2015, Desiree went from moderate bone marrow failure to severe bone marrow failure. The doctors at Tufts Medical Center have done many bone marrow transplants on children, but not on anyone with Fanconi anemia. Fanconi anemia is so rare that the doctors aren't even sure how to treat it. The Desmonds were finally lucky enough to find Dr. David Williams, a doctor at Boston Children's Hospital and Dana-Farber who has 25 years experience with treating Fanconi anemia and he decided to take Desirae on as a patient.
Having a matched sibling, being relatively healthy, and being under 10 years of age, the Desmond family decided to proceed with the transplant. Desirae’s mother Dawn has taken a temporary leave from her job to be able to focus on Desi and her preparation for surgery and recovery, and Desi’s father Rob will be taking time off work as well. The Desmond parents have four children, including Desirae.
Starting today and until the end of June, Rob and Dawn will be making trips back-and-forth into Boston for all of Desirae's pre-transplant appointments while also taking care of their other three children.
On July 5, 2016, Desirae will be admitted to the hospital and start her chemo therapy. After five or six days of chemo, her twin brother Jake will go in and have his marrow donated to her. After Desirae receives the transplant, she will be in the hospital for anywhere between 45 to 60 days with no immune system.
Desi has touched the hearts of so many who have met her. The Desmonds hope her story can help spread the awareness of Fanconi anemia and hope for better treatments and quicker diagnoses. Any donation is very much appreciated as this family of six embarks on a stressful medical journey. All funds will be used to help the Desmonds with travel and medial costs.
Follow this page for updates. The Desmonds look forward to sharing pictures of Desirae’s recovery!
The Desmond family was wrought with anxiety as they waited through several months of labs and tests with no conclusion. In October 2014, Desi showed her family how brave she could be as she had a bone marrow biopsy and aspiration in hopes of finally finding out what was causing her sickness.
On November 17, 2014, the Desmond family received a phone call that would change their lives: Desirae was diagnosed with Faconi anemia.
Fanconi anemia is inherited disease that can lead to bone marrow failure and cancer. Though considered primarily a blood disease, Fanconi anemia may affect all systems of the body. It is a complex and chronic disorder that is psychologically demanding. Fanconi anemia is also a cancer-prone disease affecting patients decades earlier than the general population. With Fanconi anemia, the body cannot repair DNA damage. This means Desirae needs to be careful around everyday things she is exposed to, like the sun’s rays, chemicals in clothes, and even the air around her. Fanconi anemia can also cause kidney failure, growth hormone issues, and gastric abnormalities.
Besides the bruising and low platelets, you would never know that Desirae has this horrible disease. Her doctor monitors her closely, ordering routine blood tests to be done every three months. Through it all, Desirae still smiles vibrantly.
At another abrupt turn in December 2015, Desiree went from moderate bone marrow failure to severe bone marrow failure. The doctors at Tufts Medical Center have done many bone marrow transplants on children, but not on anyone with Fanconi anemia. Fanconi anemia is so rare that the doctors aren't even sure how to treat it. The Desmonds were finally lucky enough to find Dr. David Williams, a doctor at Boston Children's Hospital and Dana-Farber who has 25 years experience with treating Fanconi anemia and he decided to take Desirae on as a patient.
Having a matched sibling, being relatively healthy, and being under 10 years of age, the Desmond family decided to proceed with the transplant. Desirae’s mother Dawn has taken a temporary leave from her job to be able to focus on Desi and her preparation for surgery and recovery, and Desi’s father Rob will be taking time off work as well. The Desmond parents have four children, including Desirae.
Starting today and until the end of June, Rob and Dawn will be making trips back-and-forth into Boston for all of Desirae's pre-transplant appointments while also taking care of their other three children.
On July 5, 2016, Desirae will be admitted to the hospital and start her chemo therapy. After five or six days of chemo, her twin brother Jake will go in and have his marrow donated to her. After Desirae receives the transplant, she will be in the hospital for anywhere between 45 to 60 days with no immune system.
Desi has touched the hearts of so many who have met her. The Desmonds hope her story can help spread the awareness of Fanconi anemia and hope for better treatments and quicker diagnoses. Any donation is very much appreciated as this family of six embarks on a stressful medical journey. All funds will be used to help the Desmonds with travel and medial costs.
Follow this page for updates. The Desmonds look forward to sharing pictures of Desirae’s recovery!
Organizer
Zosia Simpson
Organizer
Lynn, MA
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