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Please, please PLEASE go to this link and VOTE! VOTE! VOTE!

Then SHARE on your FB pages and sites. SHARE!  SHARE! SHARE!

TWEET THE CRAP OUT OF IT!

WE ONLY HAVE ABOUT 24 HOURS LEFT! VOTING ENDS MIDNIGHT TOMORROW!  (11.59pm  September 19, 2012, EST)

All it takes is some cutting, pasting and clicking,

Something I KNOW the vast majority of you are masterful experts at.

The DBA Foundation has qualified for a unique and exciting opportunity! We are competing in the Chase Community Giving Program and have a chance to win between $10,000 – $250,000! Over $5 million will be awarded to the top 196 charities receiving the most votes during September 6-19. This amount of money would have a huge impact on our organization and the research we could fund!

https://apps.facebook.com/chasecommunitygiving/charity/view/ein/16-1459422?ref=dd50545ebe

There are 7,000 organizations we are competing against and the animal shelter ones all have celebrity endorsers. We just have the parents and patients dealing with DBA.

Please share this link EVERY WHERE YOU CAN!

Diamond Blackfan Anemia is an orphan disease.  “orphan disease” describe diseases that are neglected by doctors, but  more specifically the term orphan disease is used to designate diseases that affect only small numbers of individuals (so-called health orphans).There is no satisfactory definition of an orphan disease. In the USA it is defined as one that affects fewer than 200 000 individuals. Well, DBA affects about 1,ooo… WORLD WIDE.

Yeah. Whoa….

When my daughter was born, there was only ONE gene identified and it WAS’NT hers. The rarity of this orphan disease meant it was up to us DBA families as a community to raise funds and awareness for research into this disease. Today they have identified almost 10 genes and unlocked many mysteries behind those three little letters, DBA. Some that are even pointing towards a cure for cancer.  Without the minimal research that has been done so far, it is NO DOUBT that my daughter would NOT be alive today

We WERE in the top 5 a few days ago but we keep getting bumped down. The most upsetting part is the vast majority of the groups beating us, are animal shelter and animal rights groups. They have celebrity endorsers that are tweeting  for the shelter and BAM, their fans flood the site with votes. Please don’t get me wrong.. I LOVE ANIMALS. We have NINE rescue dogs.. a rescued rabbit…a rescued turtle and get this… a pig. Yes… a friggin pig. Sheldon is our housepet now, and not someones pork roll egg and cheese sammich. SO we support shelters but humans lives are at stake here… I kinda would like to think that our children who are sick and some even dying out rank an animal. No matter how sad and depressing the images look and how wistful and angelic Sarah Mclachlan sings… our kids and loved ones suffering with DBA are more important!

13 years of DBA

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My kids are pretty dang awesome.  TylerLee volunteers with her cousin about once a month to serve dinners at a local church. She was asked to be a part of a program called Ambassadors of Friendship in grade school and often scolds the “mean girls” for making fun of the “differently abled” students in her school. Kylie joined a club at school where she stays after to help with autistic kids and is the Student Ambassador of her grade. Her teacher often asks Kylie to help others with their organizational and listening skills. Because of her disabilities, she is in an “inclusion” class that has a wide range of kids with needs. (We have all decided, teachers, guidance and I, that the goal will be to have Kylie removed from inclusion by high school) Ryan actually volunteers to sit with the Special Needs kids in his lunch period because no one else will, and that makes them feel bad. He frequently helps talk a classmate “down” from his high anxiety in school and when he found out this young boy was obsessed with Super Mario Brothers, he gave him his very own special edition Flying Mario plush doll for Christmas. Jordyn uses her own money to buy little funky erasers to give to a “special” classmate who needs a little more coaxing to pay attention during lessons than everyone else. KaseyMae is known everywhere as “the friend of the friendless” and Charlie, oh sweet Charlie, that kid asked if he could save his cupcake and bring it to a kid in school who missed a class party. Each one has been recognized by their schools as a “Proud Patriot” or “Student of the Month” and given awards based on their positive qualities like kindness, compassion or honesty multiple times. They give up their seats at events for others, they are drawn to those who are not usually accepted by society as viable or equal.

My kids obviously have a trend here…. They gravitate to those less fortunate than them, and I don’t mean financially…..

      My favorite memory of them was about 10 years ago. We were in the grocery store… I was VERY pregnant with Kasey.  TJ, Cody, TylerLee, Ryan and Jordyn were with me. Kylie was still institutionalized and vent dependent, in a wheelchair. While shopping, my kids attention was drawn to a young girl. They flocked around her, talking about her t shirt. Buzz Lightyear was the bomb at the time and they were all a-twitter with talk about Toy Story, how awesome the shirt was, where did she get it, how much was it, yada yada yada….. Finally I had to drag them away. Toddler Ryan shouting INFINITY BEYOND! over and over, louder and louder.  On we went with our shopping. A woman tapped me on the shoulder. She was in scrubs and was apparently this young girls day nurse. She said, with teary eyes,  “I want to tell you how amazing your kids are. Usually, ESPECIALLY, children, shun her, are afraid of her and never talk to her. Your children approached her, talked to her and never ONCE acted like there was anything different between them. I haven’t seen her smile like this in the 7 years I have been her nurse…” She hugged me and went on her way. Oh, did I not mention that this girl was strapped into her purple motorized wheelchair. She was vent dependent and a paraplegic. Severely brain damaged, obviously suffering some sort of cranio-facial disfigurement. I will never know it if was from birth or the result of a disease or accident. But it was no matter. My children never noticed. To them, feeding tubes, treachs and the loud, scary “woosh” of the ventilator were normal.

      They were raised in a home where that was our status quo. There was nothing “wrong” with it. To them, the question more often was “Doesn’t EVERYONE have a disabled sibling???” and never “Why do WE have a disabled sibling???” The word sibling was obviously not my 4 year olds chosen vernacular, but you get my drift.

When you are young or born into a family with a child with special needs the quote “the only thing normal in my house is a dial on the washing machine” pretty much says it all. A childs formative years are crucial. Teaching them tolerance, kindness and acceptance is tantamount to teaching them to walk, talk and double wrap your hand when wiping number two…

As I have been in this “world” for almost 13 years, I have seen it go both ways. I know families who have children that cannot accept the extra needs of their brother or sister. I know kids who write “I hate my life.” on their Facebook because of the excessive needs of a sibling leave them feeling neglected, forgotten, less important. Even though I KNOW the parents take every precaution otherwise. Some kids just don’t “get it”. They just can’t. Some kids learn to “get it”. Some kids just naturally do.

{DISCLAIMER: The VAST majority of families I know who also live, love and laugh with DBA www.dbafoundation.org  are nothing short of miracles. Siblings are BFFs, parents are only mildly insane (unlike Joe and I, who are perfectly and completely certifiable) and extended family is right there picking up the Reeces Pieces. But some are truly in crisis and ill equipped to deal with such a potentially tragic disease. Please, join me and praying for them.}

My steps sons were older when Kylie was born and were mature and understanding about the situation. Something I could never thank them enough for…Of our 7 other children, excluding Kylie, I only know of one who exhibited some of those “not getting it” emotions.  And they were mild and brief, definitely related to a certain age group. I am fairly certain it was mostly associated with other issues in their life and having a sick sister was just the most obvious and tangible thing to blame.

I had it lucky. I really mean it. Sure it was complicated. When she wasn’t hospitalized she was home with 24 hour nursing. Daily doctors appointments. Sometimes two or three. Strangers invaded our house on a regular basis. And often the fill ins were down right miserable. Some months, my kids spent more time coloring in doctors waiting rooms and ERs being patient, quiet and polite than they spent playing in their playroom  or backyard at home. And they handled it all with grace and humor and the pure, unconditional love of a child that was my saving grace during my darkest days of desperation and sorrow….

So suffice it to say, their experience with a sister with special needs deeply affected them. But in an amazing, blessed and beautiful way. They love deeper, laugh louder, hug more. They don’t judge (unless you wear shorts with Ugg boots or root for anyone other than the Giants) They truly know what’s important. I see this aspect of their life affecting their future in nothing but positive ways. So, when people say “Wow, that must have been tough!” I can truly say, “It could have REALLY been worse.”

So my advice to you, if you are ever faced with the birth of a child in your family that will require special attention, make it as normal and accepted as possible. As scared and overwhelmed as you may be, don’t let your other kids see, hear or feel your panic. They will look to you for guidance. They will emulate your behaviors. They will copy your actions, attitude and emotions. To a fault, actually. My kids think farting is ENTIRELY too funny thanks to me…And Joe will never forgive me for it.

so my loves, live special, love special and laugh, ESPECIALLY!

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Now that I got that out of the way, be prepared. Because my next post will be about our “Family Meeting” and just how fucking awful my kids can sometimes be.

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