+322 votes
Rayland wants to be on Ellen !!!!
Description
Rayland Camp has Rhizomelic Chondrodysplasia Punctata Type 1 for short RCDP. RCDP is a terminal form of dwarfism. There are about 53 cases known world wide. Most studies say that most children won't live past 2 years of age. These children do not walk or talk but do show emotions, such as being happy or sad. They all have feeding tubes (gtubes) and some have heart troubles. Rayland has a hole in his heart (ASD). Children with RCDP have short upper arms, short upper legs, stippling on his bones (small holes) contratures, cataracts, and hearing loss. Any sickness such as rsv pneumonia and even a common cold can be deadly. Rayland was in the hospital 2 times for pneumonia August 20th 2013 he was air lifted to Shands on a vent. We came home September 24th 2013. Then feb 10th 2015 he was air lifted to Shands and we came home March 14th 2015. He has had 32 hospital stays in pensacola and another 11 here in Gainesville. These children gettin ill can be fatal to them. RCDP children as you can imagine need around the clock care. Rayland has occupational therapy, physical therapy, and speech therapy for feeding troubles. For Rayland we travel to Gainsville to Shands Hospital and as well as to Tampa to Shiners Hospital. These places are where his specialists are at for his bones and for his eyes. Here at home he sees his physical therapist, occupational therapist, neurologist, ENT, regular pediatrician and GI doctor.
We need to raise awareness about this very rare condition (RCDP). We desperately are seeking donors for research to find a cure. Pharmaceutical companies aren't interested in investing in a trial for only 53 children because there is very little money in it for them. We need to find a cure!

Here are a few links on Raylands story as well as his Facebook page.

http://www.weartv.com//community/features/angels-in-our-midst/stories/angels-our-midst-rayland-camp-suffering-terminal-form-dwarfism-381.shtml#.VSNKyEb3anM

 http://www.rhizokids.com/

 https://www.facebook.com/HopeForRhizokidsTeamRayland?fref=ts

Please consider doing a story on Rayland and raising awareness for all the Rhizokids (RCDP)

Thankyou
Sarah Shaw
theshaws05@icloud.com
3,212 views Apr 9, 2015
anonymous
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David Bradley
Rayland Camp is truly remarkable. He is a real fighter. He can melt the hardest heart with a simple smile or a laugh. He is happy and loves life because his family loves him and have sacrificed so much for him. I do admire his family for keeping everyone up to date with Rayland during the good times and the bad. I will follow his progress and continue to be inspired by this little guy.
+5 votes
Apr 9, 2015
Wies Blom 920 points
Rayland is one of the Rhizokids and a great fighter. He wants to meet Ellen and once Ellen sees him, she wants to meet him as well. He and the other Rhizokids are adorable. We need to raise awareness for RCDP!
+4 votes
Apr 9, 2015
Carolyn Birch 230 points
This is such a rare condition, and no doubt parents of these kids need all the love and support they can get. I had to google Rhizo Kids because I had never heard of RCDP. Having lost a loved one to a little known disease, FTD (frontotemporal dementia) I know how important it is to raise awareness to help families connect with others in support groups, to assist them in providing care for them, and to raise money for research and treatment.
+4 votes
Apr 9, 2015
Jessica Haines
This little guy has touched my heart more than I could ever put into words.  I pray every day and night for him and his healing and the other children I know that are suffering with RCDP as well.  They are all amazing and deserve the spotlight to educate others on this disease.  Ellen, please bring Rayland and other RCDP families on your show!!
+4 votes
Apr 9, 2015
1tabitha1 230 points
Rayland, You are so precious! Hope you get chosen to be on Ellen.. I got to meet you @ the poker run Ms. Tondra Pope put on for you.. You are truly a remarkable fellow.. XO Mom, Stay Strong..
+4 votes
Apr 10, 2015
anonymous
Such a cutie pie.  Rayland wants to meet Ellen.  Please make it happen
+3 votes
Apr 9, 2015
Chris Hull 250 points
Truly remarkable family, truly remarkable and amazing little boy, I just cannot get over his strength and determination to fight and his smile will win anyone over. RCDP is not just rare its extremely rare and Rayland is one of just a few with this condition. It needs someone like Ellen to bring this extremely rare condition to everyones attention and lets see if we can raise the awareness and possibly find a cure.
+3 votes
Apr 9, 2015
amandaandrews 210 points
precious baby! ♡♡♡♡
+3 votes
Apr 9, 2015
kellihathaway 210 points
A Rhizo child changed my life forever, my granddaughter also was a rhizo baby, She made me see the world so different
When i found the Rhizo family page not only did i feel not so alone
I felt like I had another family,  Even though I have never met any of the kids I love them all
+3 votes
Apr 9, 2015
helen deuser
Let's go rayland u r a strong little man
+2 votes
Apr 10, 2015
helen deuser 180 points
Rayland is a strong little man we r pulling for him from pace Florida
+2 votes
Apr 10, 2015
anonymous
Rayland and his family are   remarkable, and inspire me everyday!! his smiles  will  your heart,  Deborah Davis
anonymous
RCDP needs a cure!!
+2 votes
Apr 11, 2015
anonymous
Awareness needs to be raised!
+2 votes
Apr 12, 2015
CraigPeters 920 points
Go Ryland!!
+1 vote
Apr 11, 2015
Mourol 390 points
I think Ellen needs all the Rhizokids on her show at one time. What a great way to raise awareness of RCDP!
+1 vote
Apr 11, 2015
anonymous
Littlebits is such a brave and strong little boy he been thought so much his little smile will brighten up a room... please vote for him.  Let's bring awareness to RCPD. more people need learn about. Keep prayers all these kids need it
+1 vote
Apr 12, 2015
BBob 160 points
Rayland to Ellen, yes
+1 vote
Apr 14, 2015
Judy Lerille Andre 790 points
Ellen you need to meet Rayland and hear his story.  This is a story the whole world needs to hear so more research can be done to help these kids.  Please Ellen make it happen
+1 vote
Apr 15, 2015
Sebastian's mommy 105,120 points
What an #amazing fighter you are! #beautiful children suffer from this and it's heartbreaking. Help him meet #ellen at #ellennation
+1 vote
Apr 20, 2015
+1 vote
Apr 22, 2015
+1 vote
Apr 23, 2015
anonymous
Ellen this little guy needs your help and would really be cool to see on your show.
+1 vote
May 1, 2015