August is SMA Awareness Month!! Spinal Muscular Atrophy, or SMA, is a disease that most people don’t know about. SMA is a motor neuron disease. It refers to a group of inherited diseases of the motor nerves that cause muscle weakness and atrophy (wasting).The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected and about 1 in 40 people are genetic carriers. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness. As a child with SMA grows, it is difficult for his/her weakened muscles to keep up with the demands of daily activities. The resulting weakness can also lead to bone and spine changes that may cause breathing problems and further loss of function.
SMA affects muscles throughout the body. In the most common types, weakness in the legs is generally greater than in the arms. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. When the muscles used for breathing and coughing are affected and weakened, this can lead to an increased risk for pneumonia and other respiratory infections, as well as breathing difficulty during sleep. The brain’s cognitive functions and the ability to feel objects and pain are not affected. People with SMA are generally grouped into one of four types (I, II, III, IV) based on their highest level of motor function or ability.
Here are some Spinal Muscular Atrophy facts (according to the Families of SMA organization):
- One in every 6,000 babies is born with SMA
- SMA can strike anyone of any age, race or gender
- One in every 40 people carries the gene that causes SMA
- The child of two carriers has a one in four chance of developing SMA
- 7.5 million Americans are carriers
- SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable
Read one mother’s journey about life with Spinal Muscular Atrophy – the ‘Tiffany Moore’s story’. Click here to find out how she dealt with amazing twin sons who were born with SMA. Learn about their personal story & the challenges they faced. You can also support the #MoreForMoore campaign by purchasing the Moore Campaign T-shirt and raise awareness for SMA!
So how can YOU make more people aware of SMA? Here are three great ideas:
1) Tell everyone
This idea has the benefit of not costing a thing. If you have a child with SMA or you have SMA yourself, you probably find that people are curious (to say the least). Don’t ignore them … teach them. Tell them about the disease and what it does, then tell them about this website and how they can help.
Fighting a killer takes money, and while we understand that times are tight and it costs a lot to care for someone with SMA, a donation of any amount can help. Your gift to FightSMA will fund life-saving science and research, and also makes possible programs offering support to families battling SMA. Click here to donate.
3) Lobby your legislator
The National Pediatric Research Nework Act will soon be up for a vote in the U.S. Senate. This legislation would drastically improve our ability to find a treatment for SMA and could make finding a cure a reality. Click here to read help with how to contact your senator.
Unfortunately, at this time there is no cure for SMA. However, research aimed at finding a treatment or cure for SMA is moving rapidly forward. Much of this research is focused on SMN2, a gene that partially compensates for the function of the gene (SMN1) that, when mutated (abnormal), is the cause of most cases of SMA.
Thanks to the support of our community, there’s great reason for hope. We know what causes SMA and what we need to do to develop effective therapies, and we’re on the verge of major breakthroughs that will strengthen our children’s bodies, extend life, and eventually lead to a cure.
* If you know someone who has been recently diagnosed with SMA please e-mail firstname.lastname@example.org to request a free informational packet. For more information, visit any of the following organizations:
She asked me the question because she was on the fence about whether she should have a baby. I remember that time in my life. I think I’m still at that time in my life. Should I have kids? But she was asking me seriously. I was her closest friend with real baby insight. What was the deal? Do the heart-melting moments outweigh the bad stuff and make it totally worth it?
As usual, I am a focus group of one. There seem to be a lot of people out there who think having (and rearing) babies is The Most Fun Ever. They are all like, “Oh my God! And then I get to quit my job and FINALLY buy that house in the ‘burbs and make crafts All. Day. Long. and sing songs and, OMG, I cannot wait!” And I think those people are incredible. (Don’t get me wrong, I love crafts as much as the next gal. I just like to do adult crafts. Alone.) Those people have a different genetic makeup than I do. I think my kid is awesome. All two hours a day I spend with him after living the working mom dream. And then I like to put him to bed and think about how I can’t go anywhere because it’s basically illegal to leave the house. JUST IN CASE. (There’s a lot of “just in case” in parenting. I want to tell people to go ahead and stop talking to me, just in case I get violent.)
But when posed the question, “It is totally worth it?”, I really can’t answer simply. On the one hand, I have a tiny
person: I own a 28-inch human being. He has tiny human pants and little New Balance sneakers and he thinks I am awesome. Like, really awesome. He sees me and he’s all, “Oh thank God it is you! I have been waiting on you since forever and I have no concept of time so that’s basically my whole life!” And he smiles and makes “ahhoooohhh” noises that are pretty funny because he thinks I’m absolutely following what he’s telling me. Mimic him and his mind is blown. We speak the same language!
No, shrunken human, I have no idea what you’re getting at.
But then other times he is a tiny life terrorist. He’s the biggest, most selfish ass in the history of the world. He wants what he wants when he wants it and that’s exactly 30 seconds before it’s humanly possible for me to have it. All the toys in the world are meaningless compared to an outlet or a live wire or anything else that could instantly kill him. He stole everything I knew: my life, my professional life, my social life, my sex life. I now spend evenings putting meat into a blender and then tasting it. Pureed meat! Sh*t ain’t right. He’s turned our cat into a manic-depressive who no longer stares out the window, but rather throws his body against the screen in an attempt to break through and plunge to his death.
And some of those things, like slaving over homemade baby food and losing the love of the family cat, are OK. His cuteness does make those things worth it. But the other stuff? The loss of anything that resembles my former life? That’s where things get complicated. When he wakes up screaming bloody murder just moments after I put him down, right as the wine is about to hit my lips, only to smile and laugh when I go into his room, I frankly think him a deviant little f*ck. A tiny human who was sent to this earth to make me think long and hard about who I am and what I believe.
But that’s not an answer. So I answer like this:
Having a baby is like losing your leg and winning the lottery. Winning the lottery does not make it OK that you’re without your leg, but it does give you enough of a distraction that you don’t completely lose your mind. Yes, your leg is missing, but you’re on a yacht. Would you rather be in a trailer with a leg? Who knows. Guess it depends on whether you felt like going for a jog.
My leg is gone. Blown to smithereens. I have to relearn to walk and dance and run and do everything else I used to know how to do, but I won the lottery, so that’s going to help.
Of course I miss not having a baby. When people say things like, “I don’t even remember what it was like!”, I cannot relate. I remember exactly what it was like. IT WAS AMAZING. I drank in real bars on weeknights. I made last-minute plans. I could get on an airplane without two Xanax and a booster brew and a sincere prayer that the small boy doesn’t freak out at 30,000 feet. When I made a decision, it was with very little other than my own comfort and convenience in mind. Those things come dead last now. If they come at all.
I can’t tell you whether having kids will be worth it for you. And that whole, “We are waiting until we’re ready” thing? Right. You are never ready for this. When the tiny human cometh, all bets are off. And from then on, the question is never again whether or not it’s worth it. The question is how you make it worth it for them.
*Article originally published on Huffington Post.
Father’s Day is here so I thought this would be the perfect time to acknowledge all of the dads around the country. Unfortunately, society is so hard on men. There are so many fathers who may be unemployed, incarcerated, abusive or just plain deadbeats but what about the men who are good fathers to their children? What about the men who do the right thing because they know it’s what they’re supposed to do?
As a woman I get tired of having to defend fathers, particularly the ones who want to be good fathers but the mothers of their children won’t let them (which will be a whole other post). I believe that having a father is critical to successfully raising a young boy or girl. Without them, the person that suffers the most is not the mother or the father, it’s the child. Study after study has revealed that children continue to fare better when their father is in their life especially if they live in the same home. Children are less likely to be incarcerated, drop out of school, exhibit behavioral problems and fare much better academically. It’s no secret that 2 is always better than 1, especially when it comes to raising (and paying) for children. Am I saying it’s the only way to raise a child? No, but having a father in the picture is certainly vital to raising a good kid. Children NEED their fathers.
Now a “father” may look different for different families. He may be in the form of a stepfather, a grandfather or even an uncle or male mentor. I’m certainly not saying that a good father figure has to be the child’s biological father. But the fabric of who we are is made up of where we come from. That includes our background, our personal experiences and most importantly our mother & father.
I take issue when people don’t hold their father in the same high esteem as their mother. The explanation is usually that their dad didn’t do anything for them & wasn’t around to help raise them. But that’s no excuse as to why you can’t honor the person whose very blood you carry in your veins. If your father was an absentee dad then that is a good example for you on what not to do for your children. That can drive you to be the very best father for your own children so that you don’t repeat his mistakes. Not to mention, your mother saw something in him to begin with otherwise how do you think you got here?!
So whether your dad was present in your life or not, you are who you are because of who he was.
Remember Dave Engledow, the self-proclaimed “World’s Best Father”?
2. He’s back with a new book and a handful of incredible new pictures of him and his 3-year-old, Alice Bee.
3. And his portraits of family life are just as amazing as ever.
4. The 43-year-old married dad has been capturing life with Alice since she was about 6 weeks old, starting with this photo.
5. This was another early favorite, inspired by Engledow’s “deathly” fear that he would leave Alice’s car seat on top of the car.
6. Engledow said he often shoots his and Alice’s parts separately, then edits the pictures together. Shooting the photos can take an hour or two, but editing takes anywhere from five to 20 hours.
7. Alice’s bribes include things like fruit snacks and Popsicles, or, if they need to “break out the big guns,” chocolate.
8. Though he started off just posting the pictures to entertain his family and friends on Facebook, Engledow ramped up his photography when some friends said they’d buy a calendar full of photos of him and Alice.
9. A year later, after creating a Kickstarter for his second calendar, the campaign — and his photos — took off when it was chosen as one of the site’s staff picks.
10. Though Engledow doesn’t work as a photographer full-time — he’s deputy director at the nonprofit Working America — he received a photojournalism degree from the University of Texas.
11. He also has the support of his wife, Jen, who helps behind the scenes and keeps Alice “happy and well-fed” during the photo shoots, even sometimes appearing in them herself.
12. The Takoma Park, Md., resident said he finds lots of inspiration from pop culture, like with this Breaking Bad-themed photo of them making rock candy, and from Alice’s life milestones, or just things that excite her (like throwing things in the toilet).
13. As for how long they’ll keep doing it, Engledow said his little girl will be the deciding factor.
14. “I don’t want to be one of those parents that pushes their kids to do what I want them to do. If at any point she says, ‘I don’t want to do this anymore, Daddy,’ I think we’d respect that.”
15. Eventually, Engledow said he’d like for his daughter to help him come up with ideas for the series.
16. Though it’s been three years, Engledow said Alice still gets excited to see the photos, but is still too young to realize their internet fame is out of the ordinary.
I’m sure you may have heard by now that Academy Award® winner Halle Berry has just been ordered to pay Gabriel Aubry, the father of her child (her baby daddy), an estimated $16,000 each month for child support. That’s approximately $190,000 a year for their 6-year old daughter which is a whole lot of money for such a little girl.
Although I don’t think any 6-year old child needs $16,000 a month to survive, I do think it’s completely fair that Aubry gets a percentage of Berry’s income. Halle Berry’s estimated worth is $70 million so over the next 13 years he’s only getting about 3-4% or her current worth (get it – $190,000 for the next 13 years because she’s already 6 divided by $70 million – it’s a lot of math, I know). For Halle this amount is a drop in the bucket and shouldn’t even put a dent in her bank account. Many men may be thinking that Gabriel Aubry is a lucky man but it’s not about luck, it’s about what’s fair.
I actually think this is great! I have quite an opinion on child support which I’ll write about in another post, but I think now is a good time to explore the circumstances surrounding Halle Berry & Gabriel Aubry especially since Father’s Day is right around the corner.
The women’s movement has fought for decades for gender equality & here it is! We can’t expect a man to be forced to pay child support but not women. “What’s good for the goose is good for the gander, right?” We can’t expect women to reject their child’s father if he’s trying to take an active role in that child’s life, can we? In Halle’s case, she knew that he was a model when she met him. Most modeling careers, and by most I mean 99.99% of them, have an expiration date. So if you choose to date one then be prepared that their career will end as quickly as it started. (And don’t get me started on their career prospects after they’re done modeling)
Now there are some people who think that a grown man shouldn’t feel comfortable taking money from woman, even if she does make significantly more than he does. Men are supposed to get up & go work for what they have & not take it from a woman, right? What type of dignified grown man allows a woman to take care of him financially especially if he can take care of himself? Well, it’s not about what the man can do for himself it’s about the quality & care of the child. Remember, child support is based on the concept that the child should receive the same proportion of parental income (or lifestyle) that he or she would have received if the parents lived together. “She who makes the most, pays the most.”
I am a huge advocate of marriage before procreation but if you’re going to go the “Halle Berry route”, then have a plan. Discuss what the custodial arrangement will be in the event you break up. Agree on financial duties and holiday visitation beforehand. Halle knew she wanted a baby & was purposely trying to get pregnant. Why weren’t these particulars worked out before conceiving? Her lawyers should’ve warned her, to say the very least.
I think the lesson here is – Don’t make babies with just anyone, especially if you make more than they do.