On June 11, 2011 there will be a fishing tournament to benefit Families for HoPE, Inc., at Long Pond in Harwich, MA. Please go to www.familiesforhope.org for more info on this great organization. Most of you who know me, know my daughter Maeve. For those whom do not know me, here is a brief history.
Maeve was diagnosed with a rare brain malformation 10 weeks before she was born. Meggan and I were told that with this condition, Holoprosencephaly (HPE), Maeve would not survive long, if she made it past her birth. We were told that if she did survive, to take each and every moment with her as it may be our last, she would have many, many medical issues, one being that she would be blind. Meggan and I were devastated and, prepared for the worst. At the hospital on October 18, 2007, Maeve’s birth, we had a very close friend, Deacon Dave Akin, who was there to be with us spiritually and to perform a baptism on Maeve at her time of birth. He was waiting outside the OR incase Maeve needed him quickly. We had made arrangements with the NICU staff to take care of Maeve, we met them many times prior to her birth date. We became very close with a few nurses, who were comforting us and giving us something we took somewhat for granted, HOPE.
At 10:08 am Maeve was born, Happy and healthy! We have a picture of Meggan kissing Maeve minutes after, and Maeves eyes are wide open, looking at her mother.
Three plus years later, Maeve is doing well. She does have her share of medical issues, but it is something we have become accustom to dealing with. We have become very fluent in medical terminology and definitions. We (mostly Maeve) is a very good teacher of HPE. Most doctors are overwhelmed by the knowledge we have.
When Maeve was born, we registered with an organization called, Families for HoPE. Families for HoPE is a nonprofit organization to support, educate and encourage those affected by HPE. In July of 2010, Meggan, Maeve, Nurse Julie and I took a road trip to Bethesda, MD to go to the National Institute of Health for a conference held by Families for HoPE. We met the MOST remarkable folks who all are dealing with HPE. I truly felt blessed to have gone and have met these wonderful folks I now call, MY FAMILY.
If you would like an entry form or more info, PLEASE email me at firstname.lastname@example.org I will be checking my email daily and send it right out to you.
So please check out the Families for HoPE website.