Our story for Olina will begin in a peculiar way as we will start by introducing Sydney, Olina’s oldest sister.
At the young age of eighteen months, we noticed Sydney was no longer following her growth curves. Suddenly, numerous health issues arose including the concern for the longevity of Sydney’s kidneys. After seeing multiple specialists followed by molecular genetic testing, Sydney was ultimately diagnosed with an extremely rare disease called Cranioectodermal Dysplasia (CED) and was given a second chance by a life-saving kidney transplant from her mom, Kendra Tann, in March of 2016.
(*Please read the insert below to learn more about CED.)
Today, Olina Tann, at the young age of 6, has also been diagnosed with CED. Due to the ugly nature of this extremely rare disease, Olina currently has End-Stage Renal Disease, Stage 4, and will need a life-saving kidney transplant to survive.
The Tann family has been taking a very active approach in searching for a live donor for Olina as of January 10, 2024.
We are blessed to report that Olina has the energy to continue school for the normal five-days-a-week schedule for now. With her older three siblings by her side – especially Sydney! – she waits for her second chance while still being her happy little self that brings a smile to everyone she encounters.
Olina continues the normal activities for a kindergartener while enduring many trips to our local children’s hospital here in Kansas City. For being on a limited renal diet with continued lab draws and multiple other medical tests, she remains in good spirits.
Our family has partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Olina Tann.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.
*Further reading:
CED is a ciliopathy with skeletal involvement, ectodermal features, joint laxity, narrow thorax, growth deficiency, and characteristic facial features. Most affected children develop nephronophthisis that often leads to end-stage kidney disease (ESKD) in infancy or childhood, a major cause of morbidity and mortality. Hepatic fibrosis and retinal dystrophy are also observed. Brain malformations and developmental delay may also occur.
Kidney health: Hypertension, proteinuria, hematuria, and electrolyte imbalances usually develop later in the disease course as a result of renal insufficiency and filtration defects. In a study as found at link: www.ncbi.gov, ten of 21 children with kidney disease progressed to ESKD.
CED is inherited in an autosomal recessive manner.
CED is a very rare disease. Fewer than 100 affected individuals have been reported according to a 2013 study (see link above).