Julie explains more about her situation-
This deletion’s incident rate is believed to be 1 in every 5,000-10,000. But it is rarely diagnosed. Most pediatricians have not heard of it. We spent 2 different weeks in St. V’s Children’s Hospital when Lily was 9 and 10 months old and were fortunate to meet Dr. Escobar – a Pediatric Genetic Dr. He knew where to send Lily’s blood work to have the specialized test that can detect 1p36. In September of 2008 – Jason and I went to Boston to a conference that is run by parents of children with 1p36. This conference gave us the Hope that we needed. Meeting other children and talking with other parents in our situation was very comforting. We immediately volunteered to host the next conference in Indy!Friday, Hubbard Training Systems will be helping someone who has never stepped foot in a gym and I am excited. I am sure Julie and her family would appreciate any other help from the readers of my blog, too. Thanks.
The Indianapolis 1p36 Deletion Annual Conference is being held at the Embassy Suites Downtown on July 31, August 1 and 2. The main day of the conference is Saturday, August 1. We have over 30 families attending this year’s conference from all over the US, Canada and the UK! We are holding a BBQ Fundraiser this Friday, July 17 in our backyard. We are taking donations for the conference during the BBQ. People can also donate online using Paypal. This information is located on Lily’s Blog at http://godgaveusyou.blogspot.com
Lastly- we need some volunteers for the conference. We are looking for people who are interested in babysitting special needs children. We would like to offer babysitting for the 1p36 children during portions of the conference. If anyone is interested in helping with the babysitting – please contact me at firstname.lastname@example.org