Rhombencephalosynapsis & Gomez Lopez Hernandez

Subtitle

Members Join Site

Sort by

Aimee Robeson
Member
Female
About Me


Ashlee Kuhl
Member
Female
35 years old
About Me

28 and from Ohio. New mother to a beatiful little girl with RS. Learning new things everyday. :)



Ben Taylor
Member
Male
39 years old
About Me

I was diagnosed at the age of 31 with RES, having had constant battles with balance and coordination since I was born.  I came into this world with webbed fingers and toes, a cleft pallet andsquints to both eyes.

I now know what was 'wrong' with me and hope to be able to help others to understand this rare condition.



Ben's Mom
Member
Female
40 years old
About Me
I'm the mother of two amazing boys; Jack, 10 & Ben, almost 6. My husband, Mike & I live in a suburb northwest of St Louis, MO and appreciate all the support we can get through amazing websites like these that help us help Ben!

Beth
Member
Female
59 years old
About Me

My son James was diagnosed in 2008 at the age of 26 years old. He is currently 31 years old.



Brooke
Member
Female
37 years old

Carolyn
Member
Female
44 years old
About Me


Chrissy
Member
Female
38 years old
About Me


Chrissy
Member
Female
About Me
I have a Beautiful son who is 3 who is far too cheeky and clever for his own good!! He has RS and feels practically no pain, he also has water on the brain xx

Christopher
Member
Female
About Me

Hi, My name is Christopher G.P. I was diagnosed with rhombencephalosynapsis when I was in my mommy's tummy. When I was born I show the doctors that I can breathe and eat on my own. Now I am over 6 months old and working on trying to crawl.:)



Claire
Member
Female
35 years old
About Me

My son in 4 and has recently been diagnosed with partial rhombhencephausynapsis, still awaiting testing for other issues, we live in the uk x



Dawn
Member
Female
55 years old
About Me

Mom to Cameron (GLHS, SPD, SOD, ACC and ADHD).  Cameron was born full-term on 5/19/1999.  I am also mom to Mallory (born full-term on 12/10/1996), who has no issues, except being an occasionally moody teenaged girl!  :) 

I worked full-time in Corporate America for 19 years.  When my husband died in 2005, I worked for two more years (until June 2007) and then I just got tired of juggling my stressful job, my kids, my house, my pets, etc. so I called it quits.  I'm a stay-at-home mom now, and while I love not having to get up every day and face the office and all of it's challenges, I have to admit that I was much more disciplined and productive when I worked outside of the home....perhaps it's because I had a housekeeper to help.  That's my excuse anyway.  ;)

Paul and I have been together since June 2009.  He has custody of his children.  There are 4 in the brood, but there are only 3 currently living at home.  His oldest daughter moved out.  So, between us, we have 5 kids at home.  Between the kids, the 4 dogs, 3 cats and 3 horses....I'm about to pull out my hair!  There is no peace time for me.  But I guess this is the job I signed up for, right?

Happy to be here!  Thanks for the board!



Dominic
Member
Male
55 years old

Donna
Member
Female
About Me




Glenda
Member
Female
46 years old
About Me

I have an 8 yr old little boy with RS, also Gomez-Lopez-Hernandez syndrome.  He was also born with esophageal atresia and tracheal esophageal fistula.  Had surgery at 3 days of age to repair esophagus, 3 more surgeries to dilate esophagus, 3 eye surgeries.   He is NOT shunted.  He does the typical head shaking, has alepecia on both sides of his head with a little sprig of hair in the center of each.  Did not sit up til 1st bday, didn't walk til 2.  Currently in 2nd grade and acedemically on target with his peers. 



Heidi
Administrator
Female
46 years old
About Me

I have a 5 year old (almost 6) named Ethan who has RS along with ChiariMalformation. He has Spina BifdaOcculta,, Single Kidney, 2 VSD, . He had a therefore spinal spinal cord with surgery and had the decompression on the ChiariMalformation. He has 2 eye surgeries. He has a smart witted sense of humor and keeps us on our toes. Very bright and has scored very high on his K testing.



James Chandler
Member
Male
19 years old
About Me
I'm James Chandler, am 3.5 yrs old with RES.

Jean Ann
Member
Female
About Me
I am the grandmother of Sam who has RES. He is almost 6 years old.

Jennifer
Member
Female
47 years old
About Me


JoAnn
Member
Female
64 years old
About Me

Mommy (adoptive - biological Grandma) to Emma, 6 years old on 7 June 2013, diagnosed with RS and Gomez-Lopez-Hernandez Syndrome at the age of 3.


1 2 3