Miles' Leg Fund

My son, Miles, was born with an extremely rare congenital deformity called Fibular Hemimelia.  At birth doctors misdiagnosed his condition as a club foot.  From birth to 3 years of age Miles had numerous castings beginning at 4 days old.  He underwent 2 surgeries on his achillies tendon when he was 8 weeks and 13 months old.  He also wore braces on his legs 23-7 until he was 2 and a half..  All seemed to be going well until his leg took a turn for the worse and seemed like it just stopped growing as fast as his other leg.  His foot and ankle also began dramatically regressing back into a "clubbed foot" position. 

After consulting with several renowned orthopedic doctors in the country, many of whom recommended amputating below the knee, we found a doctor who could save Miles' leg.  At 6 years old and having much difficulty walking and daily pain, we met Dr. Paley in West Palm Beach, Florida.  Dr.  Paley is known around the world for discovering treatments to fix even the most difficult deformities that would otherwise lead to amputation.  We were shocked to learn that Miles did not have a club foot and was re-diagnosed with Fibular Hemimilia Type 4 (the rarest form).  This type of Fibular Hemimilia not only creates the leg to be significantly shorter, but also severely effects the ankle and foot.  We decided to immediately travel to Florida in 2013 after meeting Dr. Paley to start the surgeries that would save Miles' leg.  After 5 months living in Florida away from our family and friends, several surgeries, 7 months in an external fixator, lots of pain, perserverence, and daily intense physical therapy, Dr. Paley successfully repositioned and reformed Miles' foot and ankle to a 90 degree position.  After over a year of recovery, Miles is able to walk barefoot on his little leg for the first time. 

Now it is time to lengthen Miles' leg. 

Miles wears a 7cm lift on his shoe.  He also wears an AFO brace to protect his ankle and foot at all times.  We will be traveling once again to West Palm Beach where Dr. Paley will break Miles' tibia and fibia and insert several metal rods and wires using an external fixator to begin the lengthening process.  We will turn the struts on this external fixator 1mm per day until we have achieved the desired length. 

The funds raised will be used toward medical costs and our stay in Florida.  The stay in Florida will be for 3-4 months if there are no complications.  I will be bringing my daughter with me who will be 4-7 months old while we are there.  Unfortunately, my husband must stay home to keep working to pay the bills, but I would love for him to come down as much as possible as his vacation days allow. 

My income is also very important to my family and I will not be able to work for the several months when we are in Florida or during recovery.  The toll it takes on our family to live and pay bills in two places on one income is quite a burden in making this the happy experience it should be. 

Please consider donating to help us get through this next round of surgeries.  All of the support is greatly appreciated.  I cannot wait to see my son walk comfortably and I know he can't either!  Thank you all for your continued prayers, thoughts, an support!!!