Shiloh Pepin - A Girl With Strong Determinations
UPDATE: 9/25/2010 Sad news. I just came to update my lens and I see that Shiloh Pepin died last October died. It saddens me to see that she has lost the battle. My heart goes out to the family.
I came across Shiloh Pepin's story one evening on a special TV program, "Mermaid Girl". Born with a very rare condition called sirenomelia, Shiloh's leg's are fused together and her congenital condition comes with severe abnormalities of the bladder and kidney. She has had to be on and off dialysis as well as several surgeries to assist her body as she grows. At 10 years old, this remarkable girl is so mature for her age and extremely knowledgeable and accepting of her condition.
Shiloh lives with her mother in Kennebunkport, ME. She loves to draw, sing, joke, and is very outspoken. She has overcome many trials that would be hard for most adults to handle and faces her physical challenges with conquering determination. During the documentary I watched, Shiloh wanted to learn to swim and was able to conquer the task with flying colors. She has attended regular schools and has been able to take part in camp with other kids her own age.
I have tried to provide as many links regarding Shiloh Pepin as her amazing story should be shared with all. She has been an encouragement to me.
What is Sirenomelia
Also known as mermaid syndrome, sirenomelia is a condition where a fetus fails to develop normally beneath the waist, resulting in a fusion of the lower limbs. The condition is also accompanied by an array of other abnormalities, including kidney, colon and genital deformities. Scientists say sirenomelia occurs in between 1 in 70,000-100,000 pregnancies, the majority of which do not continue full-term. Of those that do, the majority of infants die within hours of birth. The condition affects more boys than girls, though the only known survivors are three girls - Tiffany Yorks (now 19) in Florida, Milagros Cerrone (now 3) of Peru and Shiloh Pepin of Kennebunkport. Of the three, both Yorks and Cerrone had reconstructive surgery to separate their legs. According to Shiloh's doctor, Matt Hand, D.O., Director of Pediatric Nephrology at the Barbara Bush Children's Hospital at Maine Medical Center, Shiloh's case is much more severe than those of the other two girls.
Sources: The Journal of Postgraduate Medicine, Sirenomelia.org
She Smiled All The Way Through
NECN: Amy Sinclair, Kennebunk, Maine) - Hundreds gathered at St. David's Episcopal Church in Kennebunk, Maine today to say goodbye 10-year old Shiloh Pepin. Shiloh became an international celebrity because she was born with a very rare disease called sirenamelia, which is more commonly known as "mermaid syndrome." But what made Shiloh so remarkable wasn't her illness, it was how she rose above it. Shiloh Pepin came into the world with a death sentence hanging over her head. Doctors gave the little girl born with Mermaid syndrome, three days to live.
Eight year old Shiloh, little Mermaid Girl, has second kidney transplant (first at 4 months old) and is doing great!
Very Mature Young Lady
Loving To Swim
Below - Great resources for those who may be looking for assistance or encouragement!
Link Along with Me!
- Shiloh on Facebook
Say hi to Shiloh on Facebook
Mermaid Girl Shiloh
- Portland Press
Excellent video of Shiloh and her Mom.
- Medical Library - Utah
Shows photo of condition
Sirenomelia is a rare lethal malformation characterized by severe anomalies of the caudal part of the fetus. The prevalence has been estimated at about 1 in 100,000 births.
- Cecil County Pregancy Center
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Fetus diagnosed as Sirenomelus
"Sirenomelia is characterized by fused legs and feet. The infants resemble the mythical siren. The eyes are amphibian-like and the ears are floppy and low. The urogenital and gastrointestinal systems are badly developed. They suffer from renal agenesis, absence of bladder and urethra, and an imperforate anus. Under the influence of compression in the uterus during the early period of gestation, fusion of the inferior extremities is effected. Sirenomelia is related to caudal repression. These infants usually do not survive for more than 24 hours."
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