I have CHARGE and it was rough at the beginning, but now I'm 25 and about to enter my senior year of college with the intention of going to grad school in 2025.
I am a former RBT/DSP (can't work for reasons I won't specify but I hope to get back into it when I am cleared) and though I've primarily worked with people (particularly children) with significant ASD and/or intellectual disability, the part about AAC is very relevant to me as I've used it with my clients quite a lot. I also have a family friend with CHARGE. Though she is relatively mildly affected and doesn't need/never needed AAC, it's still insightful to learn more about some of the many challenges she faces.
.... And I forgot to add that the presenters convey a very strong sense of being a real "team", which is so important, and they make a strong point about the importance of collaboration throughout the video.
No pude estar el día que se realizó este gran evento, pero estoy feliz de poderlo ver por esta grabación Gracias Fundación charge por tanto apoyo, Gracias Lourdes por ser ese Angel para las familias charge
I have a family friend with CHARGE, and I'm watching videos like these to learn more about her condition. Ultimately though, you can only learn so much about it without meeting actual people with it and understanding their experiences. Videos like this help because you can see the personal side of a clinical diagnosis.
Im mother if twins with Charge, my daughter Natasha pass away 23 yrs ago, I keep another Natalia with Charge plus Cronh's and Primery Sclerosis Cholangatis. Rest Easy,
I don’t know how I missed this but is there anyway that I can get all of the resources sent to me? Any information I can possibly get as far as education and the system I can get. I’m m having some issues with our sped director!! My son will be 7 in a week and going into 2nd grade.
I was told at 6 yr I had coloboma in both eyes, I would definitely be blind in my right eye by age 13 yr. if not both. That was unacceptable to my Granny, she found a new ophthalmologist, he made it his mission to not let that happen. I’m 62 now and have vision in both eyes, and this year was the first year my vision has radically changed. I also now have cataracts due to age. We are concerned because I have also developed MS.
My son has CHARGE syndrome and he has a coloboma in his right eye, he cannot see, when he looks down, a pen for example on the floor, he looks down, he cannot see it, he so wants to learn to drive, but he has been told he will never be able, he as been registered partially sighted. He also cannot close the right eye and has to have eye drops, to lubricate, when i take him for eye tests, the optician is only interested in taking photos, of the back of his eye, we now , do not allow them. My son has magnifiers, when reading. and glasses.
Get a new optician. I have huge coloboma in my right eye also a smaller one in the left. Hardly no side vision. I’ve been driving since I was 17…. I’m 62. You have to use mirrors and be careful but it IS possible……
hello my name Alyssa 33 year old from Vero beach Florida born with charge syndrome and back in 1987 when i born i couldn’t breathing my doctor couldn’t figuring out why i turn blue realizing my nose i could not breathing out of my nose could not drink milk at all i was mouth with tube in my mouth down my throat tell year later 1988 i start drinking milk in baby bottle got better and tell in 1992 i was 6 year old has my kidney 1 surgery and 1993 at 7 has my nose surgery few time and 1994 at 9 has my ear surgery and tell 1998 has 15 surgery when i was little kids no more surgery ever since I’m very healthy and i have speech impediment was very hard hardly anyone understanding me even taking time to understanding me better now got better as i got older and some hearing loss in one my ear and i wearing glasses one of my eye are far sight and near sight and I’m very active always like entertaining do something all the time and I’m only one in Florida has charge syndrome and i always want to have friend from Florida with charge syndrome 🙂 and I’m very nice fun caring kindness thoughtful very friendly outgoing that just me down earth truthful and m very strong never give up nothing can not hold me back I’m proud be different no matter what 🙂
My son improved excellently from his autism spectrum disorder with assistance of herbal medicine(treatment) from Solution Healing Home channel on RU-vid. Doctors Whatsapp number on video ru-vid.comh0YncUMye4c?feature=share He is a honest Doctor he keeps giving assistance till the treatment period is successfully completed.
I'm 32 I have this, I see 20-220 in my good eye in like 20-400 in the other. The worst part is not being able to drive not being employable in many situations... I haven't been to an eye doctor since I was a child. And now no insurance can't afford it
@@arshikasharma8291 I had decent grades but lived in a very rural area, there was no useful public transit so college classes would be 3vmiles apart with only 20 or 40 minutes between classes. Long story short it left me entirely dependent on the good will of others. Having an alcoholic useless family didn't help either.. I've been hiking long distance trails kayaking rivers bike packing and sailing every chance I get for the last 7 years.
@@anonpers0n That's so sad How about you can try making til toks about your travels? People love those kinds of things and you can tell your story along the way
@@Erin-dw2hq Not too good Erin. Really struggling to cope off the ventilator and he's had the major transposition of greater arteries op. I'm so desperate for him, his parents and my granddaughter.
@@lesleyhogg2495Hi there, my baby brother had similar defects of his airway being not fully developed. He was born a month early and the doctors said that only surgery might help. But my brother also had severe T cell lymphopenia and it would be too risky to do the surgery. After a month, my parents decided to let him go peacefully. So ever since I’ve been interested in Charge Syndrome as I’ve never heard of it before. Hope your grandson is okay <3
@@asianchloe Thank you for messaging me. My little grandson is at home. Complex care. I don't know how things will end, but for now his parents, we all, have him to love. It's heart breaking.
This is a wonderful video. Very encouraging. Things we’ve already faced and come through but encouraging non the less!! There are still questions and issues but my son is doing awesome!!
