We made it to our first goal which was $100 our next goal is $200
Now that we are at $215 our next goal is $500
would you consider donating any amount to help Bella raise money for the American heart association?
As you know coming across my blog both Bella and I have 22q112 deletion syndrome which is a total body disorder that affects all of the body functions from head to toes. That there is around 180 different common symptoms. 22q is not curable there is no going out and picking up a new piece of missing chromozone dna however there are treatments and options out there like Speech, Ot, Pt and skills such as coping cat and Dbt therapy’s. Adhd and panic disorders and that goes without saying it also can affect the heart is so many ways. Bella had a small hole in her heart when she was in uturo but when she was born it closed on it’s own. There was extra blood pumping in the lower left ventirical. We now have mild heart murmer that the dr’s
I am open to guest posts we also have a fan page 22qmommiesquietplace If you can't donate please like and share. Encourage someone who can help Bella out. This is her very last year. Bella is a 5th grader.
Bella set the bar high last year earned $600 dollars.
The event is on the 22 of Feb The kids do fun challenges the the class the earns the most wins a banner on their class room door with a pizza party. Bella class is not in first place this year not even in 4th. These kids are going for the big prize wireless headphones that cancel out noise. Bella wants the headphones sure but we own a pair so Bella is just happy with the tee shirt and the keychain which she has earned already. Thanks to 3 donors. :) Bella needs to complate badages though and needs 7 more donors to get the 10 donation badge. If you want to help you can donate as little as $10 that's two cups of coffee.
. I shared a mini blurb about Bella's heart issues when she was in uturo (aka in my stomach) over on Instagram.
incase you missed it Day 14:
I was asked if Bella had any heart issues as both Bella and I have 22q.
Bella in uturo had a hole in her heart lower left ventricle and it some how repaired on it own! (Only God?) science? magic who knows but I sure was thankful.
right as soon as she was born she did turn blue and have to have the calcium treatments because of low calcium from hypercalciema.
Bella now just has a mild heart mummer that we check yearly on. If you remember the last fund raiser it was for the Dog jog at school Bella loves running and seeing those emails that someone donated on your behalf. Bella even checks daily to see who has donated.
Bella does have some extra complications that require a lot of dr visits so I have blogged about her journey on my website faithfully for years. I have switched blog platforms when from a hobby blogger to a writer and speaker. I have won awards for advocating and mentoring other parents with children who have the same disorder Bella and I have. . I did so because I wanted to document all of it but I also wanted to help others out there know that they are not alone like I was when I was first diagnosed.
In the 10 years I have been advocating people have watched us online via videos bella did a mini series about the visits with speech, ot and pt. We also see a team of dr specialist for the calf palate and hypersnality speech with the crainofacial clinic at C.S Motts children’s hospital in Ann Arbor a few times a year. Our next visit there is in Aug as Bella has gotten older the visits are fewer and farther apart .On the outside she has improved to the outside world, Invisiable disablity is a difficult thing to manage. No one get’s it until they get it.
Bella is mainstreem in a regular class room and has accomdiations according to her needs. This year is her last year in elementary school and her last year raising money for the American Heart Association for the kids healthy heart program.
Over the years we get one diagosnes after the next one treatment plan after the next. The dr visits never end and she so far has 20 absences all excused based off these many visits.
Bella also has
Cerebral palsy a mild form of it is the major factor with Bella as well as adhd and mild cognitive delays. adhd both emotional and physical. That's what makes her unique and she has inserts in her shoes.
We don't allow this to stop us from accomplishing all that we have. It's just there and it is what it is. We adapted and have supportive friends and family (mostly) it wasn't always the case.
Last year Bella raised $600 and so far this year she has raised $215
So I have one call to action for this blog post trust me I’m getting to it but wanted to share the life update and our story for those who are new to the blog
I just had my 36 birthday I have 22q as well.Thanks for all the bday wishes we are going out this Saturday to celebrate my bday and Valentines day!
I also have 22q ! with chronic illness of my own I show others what 22q can do infact it inspired a campaign with the 22q foundation.
I was asked what do I want for my birthday and
all I want for my birthday is for Bella to meet her goal which is to raise more then she did last year. $600 so even if we can make it to 601 she would be so thrilled there will be no living with her if we help her reach her goal.
no donation is too small. Consider two cups of coffee $10 from every single one of our readers and friends will add up.
Bella has 5 people donate so far and I am asking for everyone to step up and pitch in.
With a goal of $600 and the next would be $1,000 for the wireless headphones that are noise canceling. Bella sensory issues we use these kind of headphones all the time. Bella wants this pair though. She's so determined she bugs me daily asking if I bugged my friends yet! I slacked big time this year. So to make up for it this long post that my friends can't say they didn't see. :)
Some children with 22q have chd and are not as lucky as Bella was and requires surgery to fix their hearts.
Bella wants to help raise money which goes towards a great cause. She has 5 days to raise $600 we need everyone to help
#charityfundraiser #chdawareness #22qtie #chdawarenessweek #heartwarrior #heartdisease #healthbloggers #congenitalheartweek #kidsheartchallange #chdaware #love