'Riding - F.A.R.' (Riding-For A Reason)...for Avery Harris
Organized by: Trudy Appis
EVENT DATE Sep 27, 2015
My friends Stephanie & Josh Harris were blessed with a happy baby boy (Avery) last September who was unfortunately born with Microvillus inclusion disease, a rare genetic disease which doesn't allow Avery to absorb the nutrients he needs.
They have been through so much in the last year with medical bills, medical emergencies and trying to raise a happy little boy...and I wanted to do something to help them....so I'm 'Riding - FAR' ( Riding - For A Reason) I'll be taking on the Twin Lights Century Ride (100 miles) on Sept 27th. Please help support Avery and my ride with anything you can spare...every little bit will help and be appreciated!
Below is the full story if you wish to read more about Avery, Stephanie & Josh...
Avery was born full term, with a normal pregnancy. Everything went along like it was supposed to, until it came time to feeding time. He ate normal just like any other baby, and then just would not stop going to the bathroom, although we were told it was normal and it all looked okay. After 8 days of being home, he was brought to the pediatrician 3 times because we felt something was not right, and the soft spot on his head kept sinking (which it did), we woke up one morning and he stopped eating. We rushed him to the hospital and so began our journey of discovering his disease. After being in the NICU at Morristown hospital for 3 1/2 months and majority of that time them convincing us that it was a severe milk protein allergy, we finally pushed for a biopsy, which Avery got when he was just 2 months old. All 3 of us also sent out our blood for genetic testing as well. After the results came back from the biopsy, we were told he had Microvillus inclusion disease, and that our genetics confirmed it. However, his specific genetic mutation of the disease is a type they have not ever seen before, we are unsure if this is a good thing or a bad thing. At that time we made the decision to transfer him to CHOP (Children's Hospital of Philadelphia) where he has gotten the best care possible. Most people with this disease are IV nutrition dependent, although Avery can tolerate and absorb formula via gtube to an extent, he cannot be pushed too far and IV nutrition is always on the table for him if he does not gain weight quick enough. Being that Avery cannot absorb certain nutrients in his gut he has developed certain vitamin deficiencies which has led him into the ICU. In his short life he has spent most of it in the hospital.
Avery has been in/out of CHOP over the last year and will have much more to endure in his life...but he is about to celebrate his 1st birthday on Sept 7th...and for that we are very thankful!