Warning this post is a long one but it’s been ages since I had a blog post up. I don’t think you guys would mind.
I am in the process of putting together a newsletter for all of you wonderful subscribers. I checked my email sub list and there is over 1,000 of you waiting for a newsletter I thought I would post a little something together for everyone before Christmas to give everyone something to read and catch up on.
Feel free to share with friends and family.
Let’s go to the old fashion grass roots way of spreading awareness.
I was so wrapped up in reading everyone else’s post about what they have been doing for bring awareness for 22q last month was 22q awareness month and I’m so proud of the 22q community they really have grown together and the moms and adults are supporting one another and playing nice. It’s been amazing to see the new fun things that are happening. I inspired so many people to start blogs and run their own support groups both online and locally. It a growing trend this 22q stuff. If you want to know more I have a faq tab on my page that links to the foundations website.
I still get calls and asked if I could parent mentor so and so with a kid who has 22q sometimes it’s a kid with 22q and xyx dual diagosnes are poping up all over now that doctors are learning more.
My own kid has 22q and mild cp from high risk complications at birth.
I am bringing back
Meet and Greets are back by popular demand because my inbox is flooded and I actually might need an assistant to help me out.
I have had a lot of different people email me their stories and over time I will add a different story and feature one or two stories a month featuring someone with a genetic disorder rare or other wise such as 22q11.2 deletion syndrome.
Here is another adult who is active in the 22q community who has a heart for spreading awareness for 22q.
What is it that we need to do to spread awareness? it’s by sharing our stories, our truth’s. No two people who have 22q are the exact same. We are not cookie cutters or carbon clones.
The majory of 22q kids does xyz does not apply to these rules. We grow up not out of 22q #growupnotout. and we speak up and spread awareness by one Doctor, nurse and teacher at a time. Yes I said professionals with letters behind their names because often we are over looked because we don’t have a degree so we are looked upon as less than. If you are an adult with 22q you are often brushed aside and not taken seriously.
That’s why I started my website to show we can and will wipe our own butts and raise awareness with out picture of pitty to earn a dollar with posters plastered of children who need funds. My daughter and I were homeless at one point living with our pastor where was the support and the funds from any of those places that raise money for our syndrome. that’s why there is people like Rebecca and I who speak up and raise awareness with out picking out of our friends pocket books for a dollar for photos of our friends.
The first step is to get on board with the correct name so that there is a dx code. there is one for digeroge syndrome not one for 22q or velocardiofacial there is so many names for this syndrome that we have to spread awareness based off what our own personal experiences
A genetic fish test is how you get tested with 22q. Usually there is no reason to test unless you have a child with 22q. I knew I had 22q before I had my daughter Bella who is now 11 I had her when I was a child in my 20’s. I only found out because my siblings have it 3 of them one of them passed away when he was 6 years old. My father also has it but there is so much hushing about this truth this side of it because they don’t want the word really out for awareness just for the funds. I really want to get the word out to every state and so does my friend Rebecca.
I am 35 and have lived live and enjoyed being married for the past 13 years we have had our ups and downs but I would have it any other way. I am also a step mom to 3 young adults who are none 22q. I know some who don’t have 22q who can’t keep a marriage together the stress of raising a child with 22q it’s difficult I know I get it I have first hand personal experience from all different angles of 22q. From panic and adhd to multiple doctor visits which I have blogged about over the years on the fb fan page.
So here is a post I want to share another story about another adult she does not have a child with 22q but she is doing great things to bring awareness. Meet Rebecca I shared about her before but I cought up with her since and she shared about her journey.
How to do a Proclamation in your State 1. Contact your Governor And Find out the contact number for the Proclamation Office in your State. 2. Some States you have to fill out a Proclamation on their website. 3. Most States you have to do it 30 days ahead of time. 4. Most States require a person who Has 22Q11.2 to do the Proclamation. 5. Follow the wording on the Proclamation below
For more information Call or email
Rebecca Osberg 205-557-0536 email@example.com
By Amanda Ripsam
Introducing Rebecca Osberg
My Story: Rebecca Crutchfield Osberg
By Amanda Ripsam
I was diagnosed with 22q11.2 at age 38. However, I was born with 22q11.2. I have been in and out of hospitals from birth until young adult years. I was sick with Bronchitis , Pneumonia, ear infections, sinus infections, Asthmatic Bronchitis I have the low immune from 22q11.2. I also have CHD related to 22q11.2. I was born with a right sided aorta, VSD : Ventral Septal Defect, and heart murmur. At age 3 years old I lost many of my teeth , due to teeth crumbling from 22q11.2 , and on many antibiotics . I remember being in the oxygen tent many times. I used to get 9 shots a day as an infant and toddler. My dad bought my first teddy bear while I was in the hospital. Doctors offices and hospitals seemed to be my second home from infant to young adult years.
Adult has slowed down some. I was the typical 22q baby, and no one new. In elementary,
I was still sick with recurring ear infections, bronchitis, and pneumonia, and kidney infections. Still, in and out of doctors offices. School in early years was difficult, especially having a learning disability, and not even knowing about it.I had much trouble with reading and math. Especially basic math. My dad drilled me many times. It was very frustrating at times. In the summer, I had extra help with reading. In Junior High and High school, I still had trouble in basic math and science. The harder things seemed easier for me. I did great in Algebra and Geometry. In high school, I developed hyper nasal speech and tetany, however, my low calcium levels did not show up on lab work until about age 24.
I have now learned that lab works can be normal, and calcium can fluctuate. I had many nerve test done and no one knew what caused my hyper nasal speech.I finished high school with a B average, and after high school, went on to college to get my LPN degree. Passing was a B average. I passed nursing boards the first time. Getting my LPN license was my first biggest accomplishment, except for my first biggest,
At age 13 , my strong Faith. I had trouble in Nursing jobs because of the low immune. I stayed sick, taking care of sick people. And, I had trouble with the social problems of 22q.11.2. I wish I knew then what I Know now about the ADA American Disabilities Act, and I could have received work accommodations. In young adult years, I developed Bipolar Disorder, and then Bipolar Affective Disorder, which is caused from 22q11.2. I am now medication controlled but have been in and out of many Counseling and hospitals. I have been in many traumatic and dangerous situations, because of not thinking clearly, cause from the emotional and social problems of 22q11.2 I was suicidal at the age of 13 and 18. However, at the age of 13,
I wasn’t aware of what was happening. My third biggest accomplishment was marrying my husband Tim. We have been married 18 years this Oct.2nd. We were not able to have any children , I assume because of my 22q11.2. However, we have been active in our church with the Van ministry with kids , and Senior Saints, and in our community. Since being diagnosed with 22q11.2, it has given me closure. I found the diagnosis online, and I had one awesome Physician who listened to me and the test was 22q11.2. She has done the Fish test to determine. I have been doing activities to raise awareness since being diagnosed. I was first with Dianne Altuna and the VCFSEF organization, hosting walks at our local mall.
I received my first Resolution raising awareness for 22q. I had many Proclamations and Resolutions done since them. I am now with the 22q International Foundation, and on the Ancillary Board. I have hosted many zoo events with the 22q International Foundation, met many Governor officials. I have my own Radio Show, with WJEC FM. 100.7 and, my own TV show; called 22Q Alabama and the Awareness Show, with channel 8 of Hamilton and starting with My Mississippi and Channel 49, hopefully soon. I have a hugely supportive family, immediate, and extended. I have 1 sister, and foster sisters, a host of Nieces and Nephews, awesome parents who have given their all for me and my husband. And many church family and friends. It is important to Raise Awareness for 22q11.2 because it is either diagnosed late in life or not at all. I do not want anything to face what I have faced. I have also been able to start a new non-profit for 22Q Alabama, and I was first appointed Deputy Commissioner Special Needs In the city of Sulligent Alabama, and now I am appointed Deputy Commissioner Special Needs in Lamar County Alabama. And it is an honor for the friends I have met all over the world. You are an inspiration.
Top left: Billy Rogers my Brother in law, my sister Tiffany Crutchfield Rogers, My Great Nephew
Mason Baughn, my Niece Kelly Baughn . Beside Kelly: Tristian Rogers and Jacey Rogers my nephews.
Anna Claire Baughn my Great Niece. Beside my sister is my Dad Kenneth Crutchfield, my Mom Patsy
Nolen Crutchfield, Rebecca Crutchfield Osberg beside my mom, and above me is my husband Tim
Osberg. by Amanda Ripsam