Gästebuch
The Lunds
Dienstag, 15. Februar 2011 06:05
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Never Lose Hope
Our son, Gavin, is 3 and 1/2 years old. This weekend he spoke his 1st word "og" referring to his Dog !!! He is so proud of himself, as we are of him. He says it over and over.
WE try to never lose hope. He always suprises us.
WE try to never lose hope. He always suprises us.
Marion and Nico
Dienstag, 11. Januar 2011 08:55
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Saskia
Our daughter Saskia was born in 1991 in Eindhoven (the Netherlands), we still live there. Saskia has two healthy and strong elder brothers. At the age of one we recognized disabilities. In 2006 intracranial calcifications were discovered and in 2007 AGS was diagnosed. Saskia never managed to talk or, among others, use her legs. Mentally she is only two years old, she is too small for her age and since many years she only weights 35 kg. Saskia is fully dependent on her wheel-chair. Gradually, her physical possibilities become less. Probably she has cortical blindness periodically. Her hearing is well developed but sensitive. She does not like loud noise and she often is startled by sudden sounds. Saskia sleeps a lot: 12 h a day. She lives at home, we have a nice and fully adapted house (with a bed- and bath-room on ground-floor). Saskia loves travelling in the back of our wheel-chair adopted ‘grand’ car. Five days a week she is at a school for disabled children. One night a week and once a month or so she stays in a specialised guesthouse for disabled people. We learned to communicate without spoken words, by our eyes, words and hands. Almost all AGS people have inherited their disabilities via genetic errors in their parents’ DNA. Strange enough: we do not have AGS in our DNA. Possibly Saskia changed her own DNA when she was very young. We are very happy having her and we are used to the energy she needs from us.
Judy
Montag, 10. Januar 2011 23:33
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Kyah
My grandaughter Kyah has been DX with AGS about a month ago. She is 3 1/2 and can't sit, walk or stand. She also has never talked. She is tube feed now for over 2 yrs. We are so blessed to have her. She always has a smile for everyone.
We live near Springfield Missouri. I would welc ome any information.
We live near Springfield Missouri. I would welc ome any information.
Ana
Montag, 15. November 2010 04:49
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Aicardi Goutires Syndrome
My daughter is currently seven years old and was diagnosed with AGS when she was six months old. From then to now she has progressed a lot. At first she ate everything pureed, but i started to give her solid foods, started out with soft to harder. I started to get her used to solid foods before she became scared to try them. Now all we have to do is cut evrything into bite size pieces and she just grabs it with her hand and puts it in her mouth. it took a lot of time to show her how to do this. She started out with floor time therapy, physical therapy, and occupational therapy at HOLDING HANDS therapeutic center. These therapies have made her try harder and she started to do better. Now she is in Speak therapy and in social skills therapy. She is now currently able to walk with a walker. We had to have a lot of patience. But with patience, love, and moral support she is now able to do the things she hasn't done in seven years. She has had, so far, two surgeries. The first one was when she was three years old and at five years old, to stretch and lesson her tendons in her legs and ankles. We live in her Los Angeles California and we are always looking to see new therapies and she has amazing doctors in the cedars sinai medical center.
Robin
Montag, 11. Oktober 2010 03:22
Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!
Son With Aicardi Goutieres Syndrome
My son is 5 years old and he was recently diagnosed with Acardi-Goutieres Syndrome. He eats well by mouth. However, everything has to be pureed. He only weighs 23lbs but he does appear to be growing and striving quite well. He does not talk and he has cortical blindness but his hearing is very sensitive. He is very easily startled when he hears loud sounds. I have decided to feed him lots of fresh vegetables and fruits along with a daily vitamin I crush and put into his food. I also give him organic milk to drink and lots of love. I am not sure if this is what's helping him strive but I do not know what else to do because this syndrome is so rare not many people have any answers. I also wanted to say we are originally from Michigan but now live in North Carolina. However, we are African-American and from the pictures on the website most of children are from many other Countries, cultures and backgrounds. Does anyone else know of another African-American child with AGS? We love all people regardless of their race or culture, but I was just curious if there was anyone else with our same racial makeup or background. Anyone please feel free to email me anytime. Robin & Kyle
389 Einträge im Gästebuch