Beating the odds is what Shiloh Pepin does best.

Shiloh is a playful 8 year old from Kennebunkport, ME. She is an outspoken child who loves to be the center of attention. She sings with gusto, draws with flair and never misses a chance for a good wise crack.

Born with a birth defect called sirenomelia, she is one of three known children in the world living with this usually fatal disorder. That she survived at birth was incredible in itself; that she has survived every medical crisis in her path is nothing short of miraculous. Sirenomelia, sometimes referred to as mermaid syndrome, is a rare congenital condition in which the legs are fused together and there are severe abnormalities of the bladder and kidney.

We need to thank so many other people and I do not want to forget anyone so globally let me say THANK YOU.  The money raised and donated has ensured that all the medical bills are paid and most of our out of pocket expenses were met.  Although we have plenty of ongoing health care bills and plenty of new expenses we do not have the overwhelming debt from the almost 3 years of her being on Dialysis and hospital expenses is awesome.  Its nice to incur new experiences and know  we do not have to worry about the old ones is an unbelievable feeling and one that we would not have experienced without everyone's generosity love and support.  Thank you is not enough

Shiloh has for the first time in her life put on weight... She has gone from a failure to thrive to an eating machine....  We have actually had to put her on a balance diet and exercise routine as she has gained a little too much weight.  With the help of a program called the count down clinic we are learning as a family to eat healthy. 

Shiloh now has energy...We now have to find ways for her to get some good exercise.  She has been taken swimming lessons.  With the help of a new wetsuit that was made for her by Johnson sporting goods in Brunswick and her Swim instructor Jared she can now swim on her own.  To see her in the water, her natural environment is uplifting to say the least.

The newest addition is a Bike that she can pedal with her hands.  I took her for her first bike ride outside yesterday and I was so proud of her... She said to me "See mom they made a bike for me to ride."

She has had many activities this summer from visiting the Wheelchair accessible tree house at Pine cone camp in Rome Maine to multiple visits to Fun town she has had a great summer.  We now are getting her ready to go back to school and are looking forward to great attendance this year as she is so healthy.

Thanks again to everyone.

You can help Shiloh by making a donation to Shiloh's fund.

Thank you!