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Last night some of my family and I were on tv for the telethon raising money for NCH. I was only interviewed for 2 and a half minutes, but CDH was mentioned along with the importance of continued research...so I guess thats all that matters. It was supposed to be an award ceremony for Children's Champions, where the kids get medals for their success over illness. Jeremiah was invited while he was alive, but they re-extended the invite after he passed anyway.
Ohio Co-Rep/Indiana Rep Mother to Jeremiah Isaac Deskins 9/21/2007-1/12/2008 Left Sided Agenesis Type CDH. NICU 3 months- Home 22 days. 1 repair- nissen- gtube- wound vac & graft- enlarged liver- kidney reflux due to malformation of kidney valves-narrowed aorta- malformation of right pulmonary vessels and of course- the ever present hypoplastic left lung. http://www.jeremiah-deskins.virtual-memorials.com http://heavenly-angels.org/graphics/...ingmyangel.gif http://lilypie.com/pic/2009/10/29/V8wd.jpghttp://lagf.lilypie.com/tQNem4.png http://lbdm.lilypie.com/ucO7m4.png
Good deal!
They wanted to use Michael for that, but I didn't want to put him through the circus of the telethon itself. I told them they could still use his story but apparently us not wanting to participate in the live show was a deal breaker. Their loss.
~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!
Sarah-that is wonderful! It's great that they still acknowledge what a champion Jeremiah was for making it through so much.
Corin New England State Rep [img]http://i171.photobucket.com/albums/u312/GabrielMommy1118/1-3.jpg[/img] [url]www.gabriel-nava.virtual-memorials.com[/url] Gabriels website [url]http://www.youtube.com/watch?v=N66S-vt5sI8[/url] Gabriels Video [url]http://corinscrazylife.blogspot.com/[/url] My Blog [url]http://newenglandcherubs.wordpress.com[/url] New England Blog
Oh, I forgot to mention I cried half the time, too
Ohio Co-Rep/Indiana Rep Mother to Jeremiah Isaac Deskins 9/21/2007-1/12/2008 Left Sided Agenesis Type CDH. NICU 3 months- Home 22 days. 1 repair- nissen- gtube- wound vac & graft- enlarged liver- kidney reflux due to malformation of kidney valves-narrowed aorta- malformation of right pulmonary vessels and of course- the ever present hypoplastic left lung. http://www.jeremiah-deskins.virtual-memorials.com http://heavenly-angels.org/graphics/...ingmyangel.gif http://lilypie.com/pic/2009/10/29/V8wd.jpghttp://lagf.lilypie.com/tQNem4.png http://lbdm.lilypie.com/ucO7m4.png
Jeremiah was a champion, what a wonderful way to honor him.
Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg
I would have cried also. Defantly a good way to honor him.
Lots of Love- Carrie Mom to Colton Michael- RCDH-Surgery at 5 days for a repair and at 6 months to add a patch.
What a great way to honor Jeremiah.
I would have cried to.
Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]
Way to go Sarah. What a wonderful thing to do in honour of Jeremiah.
Danielle - Lily's mum. Lily 31.07.07- Diagnosed at Birth - LCDH- Repair: 13 hours old- Ventilator: 5 days- NG tube: 7 days- Hospital: 16 days. Also mum to Ethan 21/06/05 http://i256.photobucket.com/albums/h...nLilysmall.jpg
Sarah great job spreading awareness! Jeremiah would be so proud of you. You are doing a great thing by volunteering and keeping his memory alive.
I don't know anyone who wouldn't cry through that. You are a strong person to tell Jeremiah's story. I am proud of you!
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>
Sarah,
What a wonderful way to honour Jermiah...
Big hugs to you
xx
Sharon - mum to Liam - 30/04/03 RCDH- 2 CDH repairs- Vent: 22 days- oxygen: 315 days- ectopic right kidney- NG Tube: 3 years & 7 months Chelsea-Rose - 08/03/99 Co-Rep for Australia - sknott@cherubs-cdh.org http://i281.photobucket.com/albums/k...nLiamsmall.jpg
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