Friday, November 29, 2019

Axel Turned 2, On The Perfect Day!

Hello all!

I hope you all had a great Thanksgiving!
I know we did!

Around our house, as Thanksgiving approaches, we get geared up for Axel's birthday! (On November 26th!)
It makes this time of the year even more special (and incredibly busy!!).
The fact that Axel has THIS birthday, is kind of a work of God (for lots of reasons, of course, haha).

This time of the year is really difficult for me.
20 years ago, on December 26th (1999) my beloved niece, Becca, passed away when she was 3.5 years old.
She was my moon and stars and it broke my heart in ways that can never be mended..

Fast-forward to 2005. My dad passed away very suddenly, just a couple of weeks before I was to cook my first Thanksgiving dinner, by myself.
That meal was quickly cancelled.
Missing my dad is something that hits me, often, still. He was with us until I was 23 years old, I often think of how unfair it is, that he couldn't stay longer. 

These days, I am very happy to contribute to the Big Meal, but I have never reattempted it myself.
Even thinking about those huge life events, has my eyes clouding up. Even after all of these years.
I'm thankful that he was here as long as he was but there will always be great sadness when I think that my children never got to know their grandpa.

So back to the reason THIS day is perfect!
With holidays a bit bleak and blue, God gave me the one thing that I could have NO CHOICE but to be happy about!
How could I possibly mope around and be sad with my warrior looking on!?

Definitely not!
God knew that with the sadness at this time of year, I needed my warrior to help me through it and give me the joy to persevere ♡

God planted Axel's birthday right between the 2 dates that affected me more than most other life events. 
His plan is always good.

And though I have woes (who doesn't, right!?) it is easy for me to push them away and look to the love shining in my boys' eyes. <3


I thought I would do some pictures and give an update.
It has been awhile and Axel has been working SOO hard!!

Pictures First!! <3
Beginning with a couple of early favorites, then much more recent pictures
 
Above; one of Axel's first pictures <3 - He needed to be in the oxygen tent for a short time (until we knew he had no breathing troubles), he was able to have it removed and use room air, very quickly.
Above; This pictures has always made me think of him as my little budda ♡

This is the gait trainer! 
He has to wear his AFO braces and shoes- side note, these are Billy shoes and half of the shoe unzips for easy on/off. We LOVE them!!

Another gait trainer pic. He loves to use his hands to move the wheels ♡
& about those shoes, Axel really likes to watch them while hes training. Lol


This kid was So impressed and proud of himself! & us too!! The pic was taken as he 1st accomplished going forward ♡

His therapy seat is a Big favorite! It allows him to sit up by himself and investigate toys from the vantage point that's easiest- above. We just have to hold the table on very firmly or he will bust right out. Lol
Showing off his skills!
Axel sporting his poncho! I made a cute little elf hat from the lining fabric.
 
Below: Axel's birthday pics ♡
All 5 of us went to the neat aquarium close to home (SeaLife Aquarium at Great Lakes Crossing mall) It was a lot of fun and we got to see so many cool things!
Afterward, we met some family at the Rainforest Cafe (across the isle♡) and enjoyed a wonderful dinner together. 
It was a great birthday!
Plus, Axel was happily passed around for cuddles often, so he wasn't complaining. Lol
 
 
 
He loved putting his hands on the tanks and looking. Some of them were fish bowl shaped and they were a lot of fun! He had several fish checking him out, too!


UPDATE Time!
I don't even know where to start!

Axel is now able to hold his head up without support for over 40 seconds!
Gone are the wrecking ball days of him swinging it without restraint or care (mostly, lol).
Now, he enjoys looking around and can easily lower his head back to resting, with out crashing. He will even go onto his tummy sometimes and lift his head way up. THAT is the best exercise for him! It's even better because he is choosing to do it and not being forced or molded into it!

For months now, he has been scooting everywhere on his back! He resembles an upside down inchworm. It is the cutest! He has been directing himself like a pro, turning this way or that, to get to his goal. Almost as if he has already taken drivers' training!

He loves knocking towers down.
Every once in a while, I would build a tower and see what his reaction was. Usually it was nothing at all. THEN, a few weeks ago, I built a tower. This little boy scrambled over as fast as his back could carry him and knocked that puppy over! He was so smiley about it and proud of himself! Needless to say, we built about 100 towers that day. Now, I build towers for him almost every day. Over time, he will learn how to stack them by himself. For now, he watches me stack them and tries to knock it over as soon as he reaches it - ready or not. =D
(He did stack 1 block on top of another block {and THAT is huge news}, but he hasn't done it again, so that will emerge when he is ready.)

He has been using a gait trainer, too (pictures above). Each week, toward the end of PT, he gets to practice walking! The gait trainer is a mix between a wheelchair (with a bike seat and lots of buckles) and a walker. It holds him up and allows him to use his feet to move it. He is able to go backward easily (backwards is easier than frontwards). He also began to grab the wheels and can now move himself a bit that way, too! His hands move the wheels and its helping to teach his feet that they have to move to keep up. 
It took me a few days to write this post up and on Wednesday at therapy, he totally rocked the gait trainer!!! He went across a big room (frontwards and backwards) at least 6-8 times! His hand encountered an object, which has never happened before and he took himself back to it and held on for a few minutes, checking it out. His progress in the trainer is astounding! I know very well that my guy is capable of a great many things. But to be able to problem solve as he does and sort out how to get what he wants so quickly, is beyond awesome!
 There is a long way to go, but Axel is leading the way, while we proudly follow ♡
-You should know, though, that my definition of "So quickly" has a large range.. for example- his progress in the gait trainer is over the course of about 3 months. But we expected that he would need a lot of extra time, as he does with everything else. For us, quickly can mean a lot. But even if my definition is a little stretched compared to most, the meaning is very significant. 
We are still working hard on ASL and hand signs.
He recognizes a couple of sings and we are working hard to expand his vocabulary, but as expected it is slow going.
I have an incredibly long way to go, to be able to communicate in ASL (American Sign Language) but I am getting stronger with it.
Axel and I work a lot on 2 songs. Wheels on the Bus (which is a lot of fun and is only better when we see a bus, so we can talk about the song. He has no idea what wheels, people, windows ect. are, so when we see a bus, I sign that to him, while pointing and talking about all of the cool features of a bus).
There's also the ABC song and that is his favorite. He watches my fingers and smiles, then signs that he wants "more"! 


Axel is still in physical therapy (PT) twice per week, occupational therapy (OT) once a week and speech therapy 3 times, per week. His teacher of the deaf also comes several times a month (sometimes as many as 5 times, per month).
In January, he will begin an additional session in PT, 2 in OT and hopefully communication training with a Augmented and Alternative Communication (AAC) device specialist. -This is when they teach him how to understand and use a computer to communicate, ie. using pictures to select his wants/needs. We do that now, with actual pictures, but he's still learning what to do with them. 

His doctor appointments have slowed WAY down, too, and he is able to enjoy more time being a toddler ♡

He hasn't had to be inpatient at the hospital for sickness in just over 1 year, as well! 

If my "progress report" didn't quite get it across- Axel is doing fabulously! We are constantly in awe of him and he is spoiled rotten 😉

I hope you enjoyed the peek at Axel's progress!
 

Friday, November 8, 2019

I Did It ~ Custom Car Seat, Stroller, Wheelchair Blanket ~ No Coats for Kids!

Hey everyone!
I hope you are staying warm! Michigan went straight from hot to cold! It's 25* today, Brr!

Last summer, I began to worry about what this winter would be like, for Axel. 
Bitter cold, for sure!
 
He has been in a toddler car seat for awhile now.
Gone are the days of putting a blanket over his infant seat to keep him warm, while running into an appointment..

I was already worried about how we could keep him warm as a big boy. (It feels a little silly to worry about that while it was 80+ degrees outside, but the cold sneaks right up on us and I could not let it catch us by surprise).

In and out of the car as often as he is, he needed something great.

Did you know that kids in infant or toddler seats shouldn't wear a coat?
Consumer Reports- Dangers of Winter Coats and Car Seats!
The link above takes you to the Consumer reports website and tells you exactly how to make sure your baby's coat isn't too big for the car seat.

It isn't feasible to put a coat on and off while putting him into the seat.
It defeats the whole purpose.
It takes a few minutes to get him and all of his stuff into the car. That means his door is open for a couple of minutes and the trunk has to be open for a minute or 2, too. Plus all of the time it takes us walking to and from the parking lot or structure.
 When it is 15 degrees outside, even a little wind is too much!

So I began to think about what the perfect answer could be.
Friends, that could very well be my favorite question!
I start by asking myself:
What do I need to accomplish with the item;
How do I want it to look, fit, drape;
What could be added to make it better, easier, more functional;
Is it functional as intended (better or worse);
Improvements to original design;

With these questions I can accomplish quite a bit.
Using a notepad, I start to make notes and then draw (bad) sketches of my desired outcome. Sometimes, I am off and running by the end of that stage, but other times I need to get more detailed, so I can start to see it in my head. Width and length measurments, as well as many other informations can make a huge impact on any project. So checking those things over more than a few times, is very necessary.

 Fleece was definitely the fabric of choice. ✓

A blanket made sense- but would be too unwieldy and difficult, trying to wrap and unwrap him as he's being held.

Thus, Axel's poncho was born!
I could make it exactly as he needed it.
There isn't a coat/jacket or blanket anywhere that I can find, that is This custom and made to fit!

All of my favorite projects began as a thought rolling around in my head, adding and changing things as I go.

This poncho is no different.
 This isn't the best picture of the poncho in use, but my little guy doesn't care what I want my pictures to look like. lol


His head hole is custom fit for his head.

It HAD to have arm holes because there was no way he would be ok with no hands (unless it's freezing and mama says no way)!
But I didn't want him to have the freedom of free arms all of the time.
So his arms slits have zippers! Now, he can be closed up while outside and I can unzip his arms as soon as we are inside and warm, again.

I also added a set of snapping straps to the bottom of each side. They keep it from flapping in the wind and also from dragging on the ground or touching the wheels. It can just be snapped around the chair or stroller! 😍

I finished it off with a zigzag stitch, to give it that blanket like edging and I really like that touch.

I am working on mine and a couple others, already.
As soon as I'm finished testing my pattern, they will be in my Etsy shop! 

Not only do I make them for car seats/strollers/wheelchairs, I make them standard to fit kids and adults without extra equipment, as well!
In fact, mine will be the first and I can't WAIT to test it out!

If you aren't a fan on the over the head poncho style, a similar blanket could be just the thing for you!

I will share more pictures with you all, as soon as I am able!

I'm really excited and can't wait to spread the warmth!
Are your loved ones "covered" for the winter?!

I just BET I could get some Awareness On there, too! <3

I really hope you like my poncho!
Doesn't it just make you want to curl up and get cozy!?




Have a really fabulous weekend and God Bless!

Get Your Awareness On!

We Can't Be Aware of What We Don't Know!
 

Monday, October 28, 2019

HindBrain Study at U Of W a MUST for candidates!

Ever since we discovered the rough road that Axel would have to endure, when I was 22 weeks pregnant, I have been researching.

Scouring the internet, Facebook, Google, blogs, non profit sites and private companies, professionals and otherwise. Reading post after post of other peoples research and experiences, posting questions and seeing glimpses into other peoples' lives, looking for every piece of information that could help our guy. Experience speaks for a lot when it comes to rare conditions. There isn't much information to be found, so us banding together to help one another is more important than ever!

I have come across countless ways to help and care for him, thankfully.

About a year ago, I ran across an awesome Hindbrain study at
UW School of Medicine (University of Washington)


The reason this was so interesting to me is that Axel's Dandy-Walker is a Hindbrain Malformation. With that (along with other things) he has PTCD -Pontine Tegmental Cap Dysplasia-. Their research focuses on those things, as well as several others..


{Pontine tegmental cap dysplasia (PTCD) is a non-progressive neurological disorder characterized by significant developmental delay, cranial nerve dysfunction, and malformation of the hindbrain.Patients present with a variety of medical and developmental problems. Not all patients will have the same issues and the severity of symptoms may differ. The following features have been found in studies of patients with PTCD: hearing impairment, feeding and swallowing difficulties that often lead to pneumonia, intellectual disability that ranges from mild to severe, speech and language disorders, hypotonia, ataxia, facial paralysis, reduced vision, and behavioral problems. Individuals with PTCD may also have abnormalities of the heart, gastrointestinal tract, genitourinary system and skeleton. Some patients have a good long-term prognosis with normal intelligence and partial speech. The cause of PTCD has not been identified. Treatment is focused on managing the underlying symptoms and may include interventions such as cochlear implantation}

(Axel has most of the above listed components, so this study is like an answer to prayers <3)
 
Below is some information that I took off of their website. I wanted to give you as much information about it as I could.
 

 We are committed to identifying genetic causes of hindbrain malformations and neurodevelopmental disorders, learning more about the natural history (what happens as individuals get older, how are individuals similar or different), and pinpointing the cellular mechanisms involved.
Dr. Dan Doherty is the principal investigator of our lab and is also a neurodevelopmental pediatrician.

If you or someone you know would like to participate, you can see the "How To" Here! They send out a simple saliva sample kit and you send it back, it is THAT easy!!

We invite individuals with hindbrain malformations or other neurodevelopmental disorders to participate in our research studies. We are particularly interested in Joubert syndrome (JS), rhombencephalosynapsis, Gómez-López-Hernández syndrome, pontine tegmental cap dysplasia, and Chudley-McCullough syndrome. A variety of labels are used for Joubert syndrome-related conditions, including Meckel syndrome, COACH syndrome, Senior-Løken syndrome, Oral-Facial-Digital syndrome type 6 (Varadi-Papp syndrome), Cogan syndrome, Dekaban-Arima syndrome, JS with nephronophthisis and/or retinal dystrophy, and JS with Leber congenital amaurosis.

A little about Dr. Dan Doherty and his team;
Dr. Doherty's research interests focus on hindbrain malformations as a way to understand human brain development and common disorders such as intellectual disability, autism, ataxic cerebral palsy and even mental health disorders such as schizophrenia. The hindbrain regulates basic functions (level of consciousness, heart rate, respiratory rate), coordinates balance, limb and eye movements, as well as having possible roles in cognition and emotional regulation.
His group uses a variety of genetic techniques (SNP mapping, array CGH, and high throughput sequencing) to identify the genes responsible for hindbrain malformation disorders such as Joubert syndrome. Identifying the genes responsible for a disorder immediately translates into molecular diagnostic testing, and detailed work on genotype-phenotype correlations improves diagnostic, prognostic and medical management information for patients. In addition, Dr. Doherty's group and his collaborators use the disease genes to dissect the molecular mechanisms of normal and abnormal brain development in vitro and in animal models. The human hindbrain is a fascinating system in which to study the role of basic developmental processes (spatially restricted gene expression to define positional information, organizing centers, morphogenetic movements, cell-cell and long-range signaling, cell migration and axon guidance) in human disease. Dr. Doherty's clinical interests complement the research interests of his group. He cares for children with all types of central nervous system abnormalities including Joubert syndrome, other hindbrain malformations, agenesis of the corpus callosum, cortical malformations, hydrocephalus, spina bifida, intellectual disability and cerebral palsy. He also provides prenatal counseling to women carrying fetuses with abnormal CNS imaging findings to provide a pediatric perspective on these conditions.

Dr. Dan and his team seem like JUST the people that I want investigating my son's conditions!

I think it is really important to get word out about this study!
Dr. Phillip Chance started the research program in the mid-1990s at the Children’s Hospital of Philadelphia and University of Utah with a focus on Joubert syndrome. He moved to the University of Washington in 1998, and more investigators joined the lab, including Dr. Dan Doherty in the early 2000s. The research group then expanded to studying other cerebellar malformations and neurodevelopmental disorders such as PTCD and rhombencephalosynapsis.
Wow, we are really thankful that it's still happening!

I thought it was only for research purposes but they have actually "solved" some cases that didn't have a diagnoses. The picture below shows their "solved" rate!
If there is any additional information that could be learned, it is worth it!

You can Contact Them Here, if you have any questions!

You can also follow them (UW School) on Facebook, Here!

RareConnect has an online community for patients and families with this condition, so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

I hope you or someone that you love can benefit from this study!
Ours is on it's way to them, soon,and I will keep you all posted on how it goes!

Please share this study/post with everyone that you know.
You never know who could benefit or what the outcome might be.

If you would like to donate to keep the study going, you can do so Here!

As always,
We Can't Be Aware Of What We Don't Know!

If you or someone you know could benefit from this study, there is a chance they may also be interested in helping to "Upgrade Our World!" with my Call to action on Startling Reality on Awareness: Part 3 ~ Facilities Unequiped For The Most Needy- Call To Action



Get Your Awareness On!


 

Friday, October 11, 2019

Startling Reality on Awareness: Part 3 ~ Facilities Unequipped For The Most Needy- Call To Action

Today, I am taking this Awareness journey down a bit of a side street.

It's a road that many of us do not have to travel and the thought never occurs that something could be amiss.

We can't be aware of what we don't know! {One of my favorite Motto's}

Some only have to travel this side street occasionally and others, like myself, find that side street to be our main route..

What is this "Side Street" that I keep referring to??

The ability (or inability) to take care of our challenged children (and adults), while attending doctor appointments -in hospitals and otherwise..
{I am apart of multiple Facebook groups for special needs (TinySuperHeroes, Dandy Walker and Hydrocephalus groups among others). These groups are amazing and I love the help and support that I get from the other members. Brainstorming ideas to help each other, is a big benefit. I will post details on my favorite group, TinySuperHeroes, at the bottom of this post} 
In these groups I began to see the idea of "adult changing tables".
My guy is still little (not quite 2 and JUST hit 25lbs.), but even so, it is something that I began to pay attention to.
Before we know it he will be much bigger and this issue will be even more prominent than it already is.
The vast majority of hospitals, it seems, are only equipped with a standard changing station (like Koala) but there are some that are already making this awesome change to adult sized changing stations and more that are moving towards it.
That is The Best news!
 
 
Why, all of a sudden, am I getting real serious about this situation?
Our Axel has a colostomy bag. He also has hypo tone in his stomach and hyper tone in his arms and legs (basically, his arms and legs are strong, built like Popeye and his tummy is not, like Olive Oil). Add deafness and global delay and some things can get a little tricky.

We had appointments at U of M Mott's children's hospital, recently. Literally, as soon as my foot hit the doorway, I smelled the fact that Axel's ostomy bag had ruptured.

If you can smell it, something isn't right! ha
 

In my head I was running down my list of options;

1) The Koala changing stations are great but wholly inadequate to change my son's bag. They are 3+ feet off the ground, too small and the "belt" goes directly across his colostomy- which makes it impossible to clean and replace a new bag.
 

Then the fact that more than a few supplies are needed to change him- with no where available to set them and usually about 10 minutes needed to complete the process.

To add more difficulties, our little guy may not sit up or walk, but I am here to tell you that this kid can MOVE! He spins himself in circles on ANY doctors' table he comes into contact with. On his back, he pushes himself as far as he is allowed, toward the edge. Every single time. I have to hold his ankle in a vise grip to ensure his safety. So frankly, those Koala changers just make me nervous. 10 minutes on one of these could cost much more than my sanity. A fall from one would have devastating consequences. While I take very good care not to take my eyes off my guy, accidents happen all the time and it scares the life out of me, to think of it.
 

2) Change it on a patient bed. This seems like a great option, but mostly, those beds are in the middle of the room and there isn't a wall to "trap" him against. By myself, changing his bag (which already requires 4 hands when I only have two) without any form of security, is a no go. I need both hands to work on the bag and wouldn't be able to keep him near me, while doing so. (At home, the worst he can do is scoot away and we pull him back, but this is a whole different situation). 
 

A sweet nurse offered to help me hold him down on the patient bed. While I really appreciate her offer,  I recognized right away that would not help the situation. Instead, it would infuriate my little guy and cause him to cry and flail around, as he tried to beak away. Stillness is mandatory while changing his bag, so that option was completely out of the question.
 

3) changing him on the floor..

Honestly, it would take A LOT for me to consider this. My guy is a floor crawler (on his back, always) and I don't even want to think about what he would touch. Whether its on the clinic floor or a bathroom floor. You really have to sit back and think about the what ifs before deciding on this option. All we can do is make the best decision at that time, and pray it's the right one.

 If he had feces all over, I would have HAD to figure something out. There are certain times when it absolutely cannot be delayed.
 

4) The "trunk" of my Escape. This could be an option if there were fair temperatures outside, but it was chilly inside of the parking structure and winter like days are not far away. This is a struggle that does not go away, regardless of the weather ;)
 

5) We live over an hour away, so that's about 2.5 hours of driving, plus the time it takes to be seen and sent on our way, so just about 4 hours, before we would be home again. Most of the time that is WAY too long for us to want him sitting in such an unpleasant situation.
 

6) Contact the main hospital number and ask them if they have adult changing stations ANYwhere in the hospital. No, Gotcha, that was fun..... Honestly, the operator tried her best to help me. She called more than a couple of different areas where that could be a possibility, but was told they could only offer a "family bathroom". Unfortunately, those bathrooms also only contain the Koala changing station  that I mentioned as option #1.

In this case, we were lucky that his bag only had a small leak and it hadn't escaped the contraption yet, so I opted to wait.
 

However, when we got home, since I made that decision to wait, his stoma was suffering. It was bleeding and looked very sore and unhappy. :(
His stoma will be fine. After some TLC and extra bag changes to re-add the magical powder that makes it all better.. But it'll take a little while before mr. stoma is happy again :( ....and extra costly supplies that insurance does not pay for.. 
Through insurance Axel gets 1 bag, 1 wafer, 1 remover wipe, 1 barrier wipe and 1 half-moon tape, per day- just for his stoma. He also gets other "diaper" supplies for his vesicostomy and feeding supplies for his g-tube (gastrostomy [feeding] tube) We have to supplement everything to ensure that he is provided for each month. This life is not cheap.. With all of the things that our guy needs, it seems like an unending list that we could never hope to afford or provide.
 
What that means to me is... I cannot allow that situation to happen again. I will go through my options and we will have to figure something out that isn't waiting until we get home. Fortunately, staff is usually very helpful. It does really help to know that the people that care for our loved ones (for the most part) really care and want to make things easier, if they can. There just was not a perfect answer to our problem.

Should I have figured out other options? What if I did this or that.. We hate for our guy to suffer because of something that was avoidable but hind sight is 20/20, my friends and it's hard to beat yourself up over things that you felt could not be done differently.


At least not with how things are right Now..
 
After I am through with this thing, I will have contacted the hospitals and doctors offices that we frequent (and some we don't!) and will let them know of the struggles that most people keep under their hat, so as not to draw attention to themselves.
 
 
The sadness and powerlessness that a parent feels when they take their child to appointments, only to constantly be told that the equipment is not available to meet the needs of the very patients their providing care for daily, is unimaginable. 
 
 
I'm doing this for my amazing little guy. For newly found friends in this special needs world. For people I haven't met yet and people whom I never will.
I feel that pain. Your pain. I may be on the caregiver side of this issue, but I see how my son struggles and fear how he will suffer in the future.

We need to get the world up to speed, folks.  

In the past these things weren't available or even thought of.

THIS isn't the past anymore. 
 
 
In THIS present, THIS Era, things have changed.
 
The equipment exists that can change the ability and feelings of thousands of people (maybe millions??). Give them that sigh of relief when they realize they will not have to struggle today, to care for their loved one, after leaving home.
This is where I issue a Call to Action!


Click above to see the Action Letter I created for ease or create your own!
I mentioned that I will be sending letters/emails and making phone calls to various hospitals, letting them know of the huge benefits of adding adult changers to their facilities.


Could YOU do the same?!
If we all team up, we can make a real difference in the lives of those who would really value this change. While I love the idea of being able to use them, I can't help but think of all of the other people that would benefit.
More people than we realize, need additional accommodations to care for themselves. I can't imagine how reassured they would feel to know the "where" isn't an issue.  

 

Will you join me!?

Will you stand up and fight for those who can't and for those who fight for them??
 

We can make a difference!
 

We can't be Aware of what we Don't Know!
 

Get Your Awareness On!!
 

Do you feel strongly about something? Drop me a line and let's see if we can get some Awareness on!
 


 

TinySuperHeroes is an awesome non-profit that I discovered while researching Axel's conditions.

They have a web site and also have a facebook group for all of the special needs parents. The support they offer for us parents is crucial and helps most of us get through the rough times.

You should check them out at the link, if you know any special humans that could benefit.

You nominate them for a cape, share the link and attempt to get donations for the cape. However, even if you are not able to collect even $1, your hero will get a cape! These capes are just as crucial for our super kids as the group support is to us parents. It bolsters their confidence and helps them get through difficult things like doctor appointments, surgery, treatments and just being different. The "Patches Program" that they recently began teaches our kids some awesome lessons about themselves and other people, too.
It really is a Win-Win, for everyone!


I Sincerly hope that you will join me in pushing the world into a future where we can all flourish.

Would you mind leaving a comment or dropping me a quick email, if you have joined my call? I would really love to see how far this goes!

More than ever, please share this post any way that you would like. We need to see this change, quick!

Take Good Care and God Bless

Friday, September 27, 2019

Startling Reality on Awareness: Part 2 ~ Future Suffers For Our Deficiency

Our lack of awareness could cost the future.

That sounds a little dramatic, right..

I genuinely feel that is the truth, though.

If you missed part 1 of this series, 
you can find it here - Startling Reality on Awareness: Part 1 ~ The What !

https://www.disabled-world.com/disability/awareness/ribbons.php
Click the picture to find your color!
May not be a Complete or Accurate list of Ribbon Color Meanings
 
Every day that we are not making people (namely our children) aware of the differences in society (and how to react, treat and think about those differences) is another day that our world lives in the dark.
The dark that offers no comfort, support or love for those who need it, probably needing those things more than most..
If we do not guide our peers and children in good morals, respect, empathy, compassion and manners, there is no hope that our future world will be a place fit for the special people in our lives. Those that suffer from difficulties that I can not even imagine. Visible and invisible.
(I can imagine a lot, these days. I feel like there is very little that I can't imagine, medically- of course I am wrong, I know, but having my special needs little guy has put a lot of things into perspective for me and pretty much everybody who knows him. -I have told his story in previous posts but later in this series I will explain further, exactly what my statement means.)


 I guess my concern comes down to the fact that cancer gets a lot of attention. There are more than 100 different kinds, so it makes sense that it would affect a lot of people and garner a LOT of awareness!

Don't get me wrong, please.
 I am not saying there shouldn't be awareness for cancer. I can't imagine how difficult it is. It is amazing to see people come together from all over, celebrating each other when it's a battle won and offering support for those families who weren't so lucky.

This actually hits me pretty hard right now.
 I have been working on this post for a little while and was able to keep a "professional" viewpoint, until I got here.. That I would be writing on this topic, when my aunt has just reached the end of her hard battle, with this very thing, is unexpected and heart wrenching.
 I can only hope and pray that her transition was painless and that her husband and adult children can take a few loving memories from the end of her journey, with them and remember those instead of her last hardships..


 Back to my point..

I feel driven to get this out into the world!
There are so many things that people have to deal with and yet only a few "big ones" get any kind of attention.
Forget about rare conditions. They only see a tiny amount of publicity and funding because they're rare and such a small number of people even know that it's an actual "thing", (for instance, our Axel being born without an anus. Yes, we spoke those exact words- That's a Thing?!).

There are foundations for many of them, but not all.
Nonprofit foundations are amazing! These people have a true love for helping others and they do whatever they can to create and/or gather as much information as they can, to help anyone that needs it! The unfortunate part is that most of the funds come from donations. While Google says that in 2017, charitable giving reached more than $410 billion, how many charities are we talking, there? 
It lists that there are more than 1.5 million nonprofit charities in the world. Those numbers don't look too bad.. But.. something tells me that there are a lot of other charities that are "for-profit" that people might not quite realize. However, Google isn't quite as easy to pin down on that question.

Let's dig into this a little bit. I think I can help you better understand my view on this delicate topic..

Frankly the number of new cases of cancer (cancer incidence) is 439.2 per 100,000 men and women per year (based on 2011–2015 cases)
When you consider this United Nations estimates the number of men to approximately 3,776,294,273 while women are estimated to be approximately 3,710,295,643, in the world. Approximately, 107 boys are born for every 100 girls born.
Wow, those are some huge numbers!
I'll just use the men's figure,  for ease. Just remember to times it by 2 to get nearer to the actual number..
8,598,119.92!
Oops, times that by 2, right.
17,196,239.85 people, per year, get cancer. That is mind numbing.

Now, lets take a quick look at something rare. There were many to choose from, but I decided I would use Dandy-Walker malformation
To say that I have a big personal interest in it, is putting it lightly. I've written much about Axel and the effects of Dandy-Walker previously at these links; Axel Post # 1Axel Post # 2
Axel Post # 3Axel Post # 4Axel Post # 5
Axel Post # 6All (10) of 2019's Posts


The frequency of Dandy Walker Malformation in the US is approximately
1 per 25,000 -35,000 live births and affects more females than males.
If you go back to that big scary number above, of how many people live there are in the world..

107,894.12
Times 2....
215,788.24 people are born with Dandy Walker, per year.
That's quite a huge difference!
17.19 million vs 215,000 per year.. That part gets me.. "Per Year"..
It is mind boggling to think that these numbers occur annually.

What about something ultra rare..
With only three diagnosed patients in 27 years, Bibose-5-Phosphate Isomerase Deficiency (RPI) is considered the rarest known genetic disease in the world. There is no treatment or prognosis (meaning the likely course and outcome of the disease is unknown.)

With such a low number, I'm sure we could all come up with an approximate number of people aware that such a thing could exist. 
Admittedly, I didn't know of it until today. Did you?

If I went even further, I could times that by possible family and friend guesstimates and almost get a general idea of how many people are AWARE of each of those conditions.. But- I won't even try to go there. I think these numbers make a few things very obvious.
OF COURSE more people are aware of cancer(s), it affects an alarming number of us.


This takes us back to my original point, "guiding our peers and children in good morals, respect, empathy, compassion and manners";
 
If something as big as cancer or as ultra rare as RPI can be in our world, think of the alarming number of others. {My 1st awareness Post- Part 1 The What- gives some information on that number.} 

More importantly, think of the people that are coping with these conditions, rare or not, visible or invisible, mild or severe. Symptoms unknown to passersby.
People that we see every day, people that we know and strangers that we pass, while going about life.
Some of these people would prefer to stay hidden, not letting the world know of their struggles and suffering, just to get through the day.
Other people go out and try to help- push and shove some interest into things (whether it's their own health or awareness for conditions) that many people just do not want to hear.

For instance. This Awareness Series..
I have a good purpose for putting a lot of effort and time into this.
But, I honestly question how many people will go looking for that startling information above.

I think most of us would be happy to bury our head in the sand, than to be so enlightened. 

Unless of course, a condition takes a hold of you or a loved one.
In those cases..
I think a good portion of us want to "Get our Awareness On!" and spread the word <3

If you'd like to Get Your Awareness On, Too, check out my Etsy!


Reference Links Not Listed Above;


By the way, it's Childhood Cancer and Hydrocephalus Awareness month
Many prayers sent for all of the warriors dealing with these difficult conditions <3

Dandy-walker --- https://rarediseases.org/rare-diseases/dandy-walker-malformation/ 

Rare / Orphan Desease info https://en.m.wikipedia.org/wiki/Rare_disease

https://en.m.wikipedia.org/wiki/Ribose-5-phosphate_isomerase_deficiency