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We have been approached by a Texas newspaper to do an article on CHERUBS and we'd like to include an interview by a Texas family affected by CDH. Any volunteers? Please e-mail me at events@cherubs-cdh.org with your complete contact info if you are interested!
Dawn
I found a Texas family on carepages the other day. The little guy was just born on July 8th. His carepage name is JacksonGreen He is on ECMO right now.
The other Texas family I know also has a carepage, have already been on the news and are not members of CHERUBS.
Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>
I know that Michael Kelly is in Texas, maybe his mom Melissa will see this and be interested.
Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg
I'd be happy to unleash Michael's cuteness on more unsuspecting people. Already sent you an email, Dawn.
~Mel Mother of Michael: RCDH- ECMO (11 days)- cranial evacuation- VP shunt- hernia repair- g-tube- Nissen fundoplication- pyloroplasty- ASD and VSD closures- tracheostomy- hypospadias repair- pulmonary hypertension...but what he lacks in lung capacity he more than makes up with charisma!
We would be happy to share Matthew's story as well.
LCDH diagnosed at birth- surgery repair at 2 days old- vent 9 days- came home after 25 days in the NICU!
I don't have outlook but I can be contacted at 936-756-8246 or 936-444-8224
LCDH diagnosed at birth- surgery repair at 2 days old- vent 9 days- came home after 25 days in the NICU!
Amy, I am going to make you CHERUBS blog coordinator, you are so great about finding and staying in touch with CDH parents through blogs.
The reporter has Melissa's number and I'll pass yours along too Laurie. Thank you both!
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
CDH International UK
CDH International Canada
CDH International Switzerland
CDH International Netherlands
CDH International Singapore
CDH International Hong Kong
Messages may be answered by CDHi Team.
Something else we need from a TX member - a State Rep! Badly. We have over 100 members in TX, we need a Rep and I would LOVE to see a CDH TX picnic in January or February (and so would the reporter)! It's not that much work, really. Picnics are usually pot luck so the majority of that work is contacting the members, coordinating who's bringing what and booking the picnic area. Any volunteers??
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
CDH International UK
CDH International Canada
CDH International Switzerland
CDH International Netherlands
CDH International Singapore
CDH International Hong Kong
Messages may be answered by CDHi Team.
COME on . someone be a rep, it's great :0)
Dawn- LOL Thanks! Though I think I have recently hit my limit! Iam having trouble keeping all the expectant and new CDH babes straight.
Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>
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