Microcephaly

I’m here, darling. Lost with blindness and also maternal German measles or rubella and microcephaly and other conditions do this related to reading memory and cognition, learning performance and coordination, balance, and gate specifically and gate issues and coordination issues among other things with other comorbidities. I want to get involved with others who may have had these conditions fallen into the cracks and or have not have opportunities to be diagnosed in childhood and or I’ve had problems during school although I thought I was smart. I have had problems getting around keeping all and navigating and navigating and and reading. I’m also interested in Technologies Therapy and Technologies to help for these types of issues. I’m interested in for other people I’ve had other experiences and what they have had. And I’m 57 years old with no light perception and also with a circadian irregular sleep disturbance and irregular circadian rhythm disorder with sleep and difficulties with executive functioning focus, hyper focus, and switching from one task to another low tolerance for frustration and other mannerisms. I have also had difficulties in adulthood, trying to find professional, occupational therapist and professionals who worked with people with non-vision with these difficulties and to get resources and help. And some wondering what other experiences people have had with these types of conditions and how you get help or how they got help and what they did. I have some difficulties with expression have had speech therapy as a child, but have a speechless that I’m somewhat unaware of that I’ve been told so I have that. I also have difficulties typing and using touch screens and dictating soft keyboards and using AI assistance. So I do have disturbances in the brain no seizures, but disturbances and difficult planning and doing routines and mental scattered and those types of issues. I’m not a role learner and many more since experience perception and Can say action movement hands on motor sensory and other ways of learning, drama and metaphor and association in using association for and I am not a role learner I am not good with memorization so that I am not. So I do learn differently and I’ve had not very good experiences in either residential or public or higher educational settings. Sometimes I have to re-read and listen to things being described several times to pick it up. I have a slow process speed. What experiences of others had in this situations and what and how they dealt with them in what experiences I’ve had. No heart issues or hearing issues of those type of things but no muscle tone I think. In the other questions for me, let me know. Questions for you again what experiences of others had with these conditions or any of these conditions and what do you do? How do you abdicate and how do you doit difficult for me to do because a lot of people don’t listen to somebody unless they are professional, even if they are ex experien And I’ve tried to do some drawing and other things dancing and some other things. Sometimes difficult to learn things with my work memory issues. So how do you compensate for for that if anybody has had those issues? What do you do. So that’s so that’s me. Interested to hear back in any of the forms.

Hi, my name is mamabeareducation. I'm here because my daughter who is 10 months old had severe brain damage and is diagnosed with cerebral palsy, microcephaly and CVI. I’m here to learn more and hope to overcome feelings of helplessness

#MightyTogether

Giving birth to my son was such an emotional moment like all births. Being told shortly after that he has a genetic syndrome just by his appearance was even more emotional for me. A few months have passed, multiple specialist later the results were in. My son who we call Aj had a full whole genome sequence study on his DNA and it came back with no real answer. The changes that were found in his DNA had little to no evidence to support them and that made his condition a #RareDisease . I mean extremely rare! As the years came and went Aj was diagnosed with plenty of other medical disabilities. Some were more challenging than others but here are just a few to name; ADHD, Autism, #Microcephaly and more. As a mom I wanted to educate myself as much as possible so that I can help Aj get the best treatments, therapies and at home care I could. I also wanted Aj himself to understand that he had several disabilities. I encouraged Aj to strive like any other child and that his disabilities were limiting him in some areas but if he poured his heart into anything that his outcome would be limitless. I went to the library, book stores and online book shopping trying to find stories that were relatable and could help me explain Aj’s medical conditions without boring him. That was really hard I couldn’t find books that shared more than one condition at a time. So I wrote one! As fist time Author I became intrigued about helping parents, educators, physicians explain disabilities and life in general of a special needs child. I started with a series titled “Superstar Heroes” Aj goes to camp is the first book in the series I have self published this book in both English and Spanish. It is available on retail online book platforms. I have taken the negative and turned it into my positive story . I continue to educate myself, others, Advocate for children with special needs and also Interpret for Spanish speaking individuals so that they can better understand their conditions. Aj goes to camp features 6 diverse children, 6 disabilities with a common goal of inclusion. The six disabilities are Autism, #CerebralPalsy , #DownSyndrome , #HearingLoss /Deaf, #MuscularDystrophy , #RareDisease featuring Aj. All kids have the Cape-Abilities to be the greatest! Support us, spread the word and become a S.W.A.N kid too.

Hi, my name is Frances. I'm here because my infant daughter has a lot of cryptic medical diagnoses and we are still waiting for answers. She has global development delay, hypotonia and possible microcephaly.

#MightyTogether

It is hard to not feel anxiety in the face of the Covid-19 outbreak. The information we are getting about the virus is changing all the time and new regulations about where we are allowed to go or who we can see changes just as fast. Governments have been urging people to stay home, with some actually using police enforcement to make sure that people are following the regulations.

Yet, today I still hear about people gathering in places like beaches or keeping their restaurants open despite the rules. And to be honest, it makes me incredibly angry.

My beautiful daughter Daisy was born with Microcephaly, a rare condition that basically translates to small head. There is a wide range of issues that can appear, some being fairly mild to others being very sever.

And Daisy had the sever type. Her brain did not develop in the same way as the rest of us, causing her to have no independent movement, difficulty swallowing and sever developmental delays. She was the love of my life- bringing me incredible amounts of joy, even amidst the difficulties of taking care of her. She was medically fragile- with her difficulty swallowing, her lungs were often affected by bits of food or water going down the wrong tube. When she got a cold, it took a long time for her to recover and every winter season, we stayed close to home as to avoid germs.

But we couldn’t shut down completely and in the winter of 2015, Daisy contracted three different colds in a row, the last one landing her in hospital. She got RSV– Respiratory Syncytial Virus- which is actually very common as most children get it at some point, normally just presenting as a bad cold. But for Daisy, this incredibly common virus, was deadly. After two weeks in the hospital, Daisy passed away on her fourth Birthday- Jan. 3 2016.

Despite our best efforts to keep Daisy safe- the entire family got the flu shot each year- a common virus which passes around schools all over the world, killed my daughter. It was a regular year, with the regular colds and flus going around. But because of my daughter’s medical fragility, she got something that she could not fight and we were forced to say our final goodbyes.

The fact that Daisy probably got this virus from a schoolmate, kills my soul. She loved school and I never would have taken her out just because she could get a cold. BUT, if there was an outbreak of a new unknown virus, I would have been one of the first to isolate. And it would have been hard and I wouldn’t have liked it, but I would have done it.

The problem would be that, I wouldn’t be able to completely cut myself off from the world. My husband would have still gone to work. I would still need to go to the grocery store. And if either of us unknowingly came into contact with a virus, we would have easily passed it on to our baby girl. Hugs and cuddles were big in our family. And is something I long for today.

So, with the news about Covid-19 and the rapid spread, I’ve been thinking a lot about my Daisy girl and what it would have been like if she were still with us. It would have been doubly scary with her here, so though I miss her every second of every day, I am glad I do not have to worry about her safety.

But I do worry about the safety of others. For those who think this virus is no big deal or think that they are healthy so why should they worry- please, please listen when we ask you to stay home. It is not for your safety that we ask this of you. It is for the safety of those who will not survive if they are infected. Just because you do not think you’ll be affected by this virus doesn’t mean that you cannot spread the germs to people who would. We shop at the same grocery stores; we go to the same pharmacies. So, I beg you, if you are able to stay home- STAY HOME! If not for you, then for Daisy.

#ApertSyndrome
I am already part of a few wonderful groups on FB and am looking at The Mighty’s Apert community, to see how we can cross reference co-morbid conditions such as #Autism #ADHD , #Epilepsy , #Microcephaly , #Aparaxia of speech with other communities.

#comorbidity

Well I went for my 33 week checkup on myself and son
After they did a ultrasound I find out that he’ll be born with microcephaly
All I could do was cry because I feel like it’s not fair
I just don’t understand how did he get it when my other two children never had it