Emery Harper Kline's Fundraiser
Mitochondrial Research at CHOC
Mitochondrial Research at CHOC
Meet Baby Emery
Kevin and Courtney Tamaro-Kline are fighting for their six-month old daughter's life. Emery has been diagnosed with a rare mitochondrial disease involving a genetic mutation on the FBXL4 gene. She is in desperate need for a cure, or at minimum, a treatment that doesn't deprive her body of key nutrition to grow and develop.
FBXL4 Diagnosis Explained
We must put our faith into research. Help us support research at the Children's Hospital of Orange County (CHOC) by making a contribution to Emery's fundraiser and sharing this page with your family and friends. This page is in Emery's name but every dollar directly advances CHOC's Metabolic Research Lab.
(Tax deduction and non-cash donation details at bottom)
~~~~~~~~
Mitochondrial diseases come in thousands of forms, but are collectively about as prevalent as childhood cancer. Only in recent years have we had genetic testing technology to specifically diagnose children like Emery. Very little is known in how to effectively treat mitochondrial diseases as they affect every cell in the body.
Treatment is complicated by the spectrum of mitochondrial diseases and that even the same diagnosis presents differently in different children. Across the board, we do not have a cure for mitochondrial diseases and are in infancy of developing treatments to manage symptoms. Significant research is yet to come.
Some prayers for Emery have already been answered. Of all the places we could live at this time, CHOC's Metabolic Research Lab is not only has one of the few in the country, but this lab has an active study on rare Mitochondrial diseases, including Emery's specific diagnosis. Emery's cells have been submitted to join this study and the research team is iterating potential treatments.
Emery's specific diagnosis is very rare - with about 100 cases diagnosed world-wide since discovered 12 years ago. The children have significantly varying abilities and life duration. While there is no clinical data to provide estimate of Emery's future, we know that her future is purposeful and uniquely hers. Together, we can make a difference!
~~~~~~~~
All donations are tax-deductible directly via the CHOC foundation. Receipts will be mailed/emailed accordingly. If you wish to donate equity (stocks, funds, etc.) or mail a check, please contact colleen.torres@choc.org and these contributions will be reflected in Emery's name.
Kevin and Courtney Tamaro-Kline are fighting for their six-month old daughter's life. Emery has been diagnosed with a rare mitochondrial disease involving a genetic mutation on the FBXL4 gene. She is in desperate need for a cure, or at minimum, a treatment that doesn't deprive her body of key nutrition to grow and develop.
FBXL4 Diagnosis Explained
We must put our faith into research. Help us support research at the Children's Hospital of Orange County (CHOC) by making a contribution to Emery's fundraiser and sharing this page with your family and friends. This page is in Emery's name but every dollar directly advances CHOC's Metabolic Research Lab.
(Tax deduction and non-cash donation details at bottom)
~~~~~~~~
Mitochondrial diseases come in thousands of forms, but are collectively about as prevalent as childhood cancer. Only in recent years have we had genetic testing technology to specifically diagnose children like Emery. Very little is known in how to effectively treat mitochondrial diseases as they affect every cell in the body.
Treatment is complicated by the spectrum of mitochondrial diseases and that even the same diagnosis presents differently in different children. Across the board, we do not have a cure for mitochondrial diseases and are in infancy of developing treatments to manage symptoms. Significant research is yet to come.
Some prayers for Emery have already been answered. Of all the places we could live at this time, CHOC's Metabolic Research Lab is not only has one of the few in the country, but this lab has an active study on rare Mitochondrial diseases, including Emery's specific diagnosis. Emery's cells have been submitted to join this study and the research team is iterating potential treatments.
Emery's specific diagnosis is very rare - with about 100 cases diagnosed world-wide since discovered 12 years ago. The children have significantly varying abilities and life duration. While there is no clinical data to provide estimate of Emery's future, we know that her future is purposeful and uniquely hers. Together, we can make a difference!
~~~~~~~~
All donations are tax-deductible directly via the CHOC foundation. Receipts will be mailed/emailed accordingly. If you wish to donate equity (stocks, funds, etc.) or mail a check, please contact colleen.torres@choc.org and these contributions will be reflected in Emery's name.
OCT
25
25
10/25/24 - After 10 weeks in the NICU, Emery has now enjoyed 11 weeks out of the hospital. We owe her life and quality of life to CHOC. With the expertise of her outpatient metabolic specialists, she would likely be living in a hospital.
AUG
19
19
On 8/8/24, Emery came home from the NICU and began life with her family.
JUL
30
30
This little baby is wrapped in prayer from Hindus, Jews, Muslims, Protestants, Catholics, LDS, even people who don't believe in prayer but are giving it a shot for her.
Waiting for a day when Emery can come home and be with her family <3
Saturday June 15th - Spent 30 min meeting her Big Brother, 2.5 year old Weston
JUN
13
13
We believe that Emery has a purpose uniquely hers. We know her to be a fighter and so her family and team of doctors are teaming up to give her the best possible future.
The Kline family is in the fight of their lives to preserve their little girl's life.
On Tuesday June 4th, Emery was diagnosed with a rare mitochondrial disease, with no cure.
Around 10 hours old, a nurse noticed Emery had a slight grunt. After analysis overnight, she was transferred to Children's Hospital of Orange County. Mom had to stay behind for her own recovery.
Comments