a blog about aspiring to live well in order to be a better example for my kids! It features self improvement, self care, health, and family.

Accepting guest blog posts- meet and greet style q and a

Accepting guest blog posts- meet and greet style q and a

Accepting guest blog posts for meet and greets for others to share their story’s living life with 22q

Either you have 22q or you are a parent or a loved one to someone who has 22q.

I would love to put a ton of your stories out there and get them out over the summer.

The emails are long and endless I get so many request and I write about the ones who I personally get to know over time and can say yes this person is a great example of hope and courage.

If that sounds like you message me and let’s get as many stories out as we can to spread awareness about this genetic disorder outside of the 22q community. I been apart of this community of people well over 15 years back when I was first diagonsed and I have learned a lot

I have learned

None of us know everything there is about 22q we each are experts on how it effects us.

22q effects everyone who has 22q differently there are over 180 symptoms that are however common such as heart issues, learning delays, speech and programtic language delays

we should let others help us know we are not in this battle alone when I was first diagonsed it took me for ever to see what 22q looked like for us adutls I had to meet others with it to know what to watch for when it come to my child.

That is the purpose of meet and greets knowledge is hope awareness is key

It’s about one cause not one foundation or organization which is why I refuse to set myself up as any of those there are great organizations out there and foundations and non profits where others share their own stories and do their own thing to help spread awareness. Mine is to connect others and together we can form forces to unite and no longer keep divided with adults with 22q and children who have 22q.

A deletion on the 22q chromosome is a deleted piece of Dna the building blocks and instructions for our bodies.

You read all of the other stories here is ours

my father and three siblings have 22q. one of the 3 siblings past away when he was 6 years old. I have been diagonsed back when I was 21 years old and became apart of the community with others who had kids with 22q but then there was not much if any support for those of us adults people looked at us like we were stuck and would not amount to very much. That’s why meet and greets are so important learning about others and what they go though has helped me and I want to pass that light of hope on to the people who read my blog .

I have gasteroparies my stomach can not digest but thankfully my daughter is okay and her stomach is fine she has constipation issues and some other issues with her health like mild form of cerebral palsy but that’s managed by lots of running oddly I know but that keeps her legs condition and toned up. We use orthopedic foot inserts called chickmuncks for her feet. She has adhd both physical and emotional. Bella also is amazing smart and fun to be around loving and not one mean bone in her body even with some of the other kids teasing her and picking on her it’s not always been easy and she handles it with such pride and says I have 22q what’s it to you! I love my spunky fun redhead and I would not trade her for anything in the world. Do you have a 22qtie like Bella who appears fine to the outside world but you know all the dr visits the struggles and the challanges they have faced to get to where they are? Maybe you are still in mist of the struggles like we were once.

I would love to chat with you and share their stories on my website if so email me and let’s chat.

mandy22q@gmail.com

Thanks so much and I hope every one has a wonderfull summer.

to connect email me at

mandy22q@gmail.com

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Meet Adam Aelick  (Male with 22q)

Meet Adam Aelick (Male with 22q)