Daughter, niece, cousin, granddaughter, child of God, friend~ Jade Oshen
Brenda, Roge, and Jade traveled to the Children's Hospital in Pittsburgh, PA on October 10th to meet world renowned neurologist, Dr. Maria Escolar and her team of specialists.
Throughout the week, the team performed numerous tests that looked at Jade's cognitive processing, motor skills, hearing and vision. The results of these tests were used to help Dr. Escolar determine if Jade is a possible candidate for a stem cell transplant, which she is. Jade's disease has not progressed as rapidly as previously projected and she is able to receive this treatment.
On October 16th, after careful and emotional consideration, the family decided that they will proceed with the stem cell transplant. This will require them to stay in Pittsburgh for about six months, considering all goes well. Brenda will be staying for the entire process; however, Roge will be traveling back and forth to continue to work and support the family.
The question now, is if a donor match can be found. Dr. Escolarâ€™s team is currently searching the world registry and hoping to find a match quickly, as time is critical. If Jade cannot receive a transplant within two months, she will not be eligible for this treatment.
If found, Dr. Escolar would like to see the family back in Pittsburgh within a week to start preparing for the procedure. This would entail one week of testing for eligibility and two weeks of chemotherapy (up to the day of transplant). The transplant process only takes about one hour and then the arduous recovery begins.
Jade will continue to regress each week, along with a rapid regression immediately following the transplant. Once the stem cells take to her body, they are hoping for a plateau period to halt the progression of the disease. The team feels confident that by performing this transplant, they will be able to preserve Jade's vision, hearing and some of her speaking abilities; however, do not think that walking or sitting will be foreseeable outcome.
Thank you for your financial generosity, love, and hope & prayers during this difficult time.
Miranda (Brenda's sister) and Ashley (Family Friend)
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Jade Oshen was diagnosed with Krabbe disease on October 2nd, 2017; however, her journey to this diagnosis started on September 18th after a routine visit turned into a trip to the hospital for an emergency cat scan. Two further MRIs, a spinal tap, and multiple tests revealed a diagnosis of the terminal disease, Krabbe.
Yet, in lieu of the circumstance, Jade's smile and laugh brings sunshine to those around her each and every day.
With a journey ahead that is uncertain, we want to make it possible for her parents, Roge and Brenda, to be able to spend as much time with their daughter, creating memories and not worrying about finances. Your support will help pay medical bills, plan adventures, and other expenses that are already adding up.
What is Krabbe disease (a.k.a globoid cell leukodystrophy):
Is an inherited disorder that destroys the protective coating (myelin) of nerve cells in the brain and throughout the nervous system.
Krabbe disease affects about 1 in 100,000 people in the United States.
Treatment/cure/life expectancy: There's no cure for Krabbe disease, and treatment focuses on supportive care. Children who develop the disease later in childhood (after infancy) may have a somewhat longer life expectancy, usually between two and seven years after diagnosis.
Cause: In the case of Krabbe disease, two mutated copies of a particular gene result in little or no production of an enzyme called galactocerebrosidase (GALC). Enzymes, such as GALC, are responsible for breaking down certain substances in a cell's recycling center (lysosome). In Krabbe disease, the short supply of GALC enzymes results in the accumulation of certain types of fats called galactolipids. The subsequent loss of myelin (demyelination) prevents nerve cells from sending and receiving messages.
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