Skip to content

'Riding - F.A.R.' (Riding-For A Reason)...for Avery Harris

Organized by: Trudy Appis

Trudy's Photo

EVENT DATE Sep 27, 2015

THE STORY:

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!

$405

 

16% Raised of $2,500 Goal

  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Bobbi Gullone

    $100

  • Anonymous

    $100

  • Trudy Lutz

    $20

  • Caryl & Eric

    $100

  • Greg Mullins

    $10

  • Maureen Smith

    $25

  • Donna Scimeca

    $20

  • Adriana Rivera

    $30

  •  
  •  
  •  
Organized by

Trudy Appis

This is a direct to organizer fundraiser.

Donor Comments

Adriana Rivera

Adriana Rivera

DONATION: $30

Wishing you all the best and hope you have a great ride ! 3 years ago

Donna Scimeca

Donna Scimeca

DONATION: $20

You got this!!! 3 years ago

Maureen Smith

Maureen Smith

DONATION: $25

Avery 3 years ago

Greg Mullins

Greg Mullins

DONATION: $10

3 years ago

Caryl & Eric

Caryl & Eric

DONATION: $100

In celebration of our beautiful grandson, Avery. 3 years ago

Trudy Lutz

Trudy Lutz

DONATION: $20

3 years ago

Anonymous

ANONYMOUS

DONATION: $100

3 years ago

Bobbi Gullone

Bobbi Gullone

DONATION: $100

3 years ago

Report this page — Let Us Know if you think this page is breaking the law or the CrowdRise Terms