Gwendolyn Strong Foundation Comes In 6th and Wins $100,000

"Never doubt that a small group of thoughtful, committed citizens can
change the world. Indeed, it's the only thing that has." -- Margaret
Mead

We did it! We really, truly did! Together, we accomplished the
monumental. Together, we raised a TON of awareness of SMA. Together,
we are having a material impact on curing it. Together, we are
changing this cruel disease -- FOREVER! Out of more than 500,000
charities, the Gwendolyn Strong Foundation, striving to END SMA,
received nearly 52,000 votes in 8 days and placed 6th -- sixth place!
For that honor, we'll receive a $100,000 grant from Chase which will
be used to accelerate awareness and research toward a cure.

Never before have we been part of something like this -- a true
grassroots movement. Something so much bigger than ourselves. Baring
witness to a change occurring -- a shift in what has been before. We
are humbled, moved, and motivated by the extraordinary that has
happened this week.

We are so proud of the amazing SMA community. The families who
virtually stopped all else in their lives. The parents who ferociously
fought and bore their souls to expose the agonizing reality of this
disease. And did so with painfully beautiful poignancy.

We are humbled by the extraordinary acts of kindness, the grassroots
activism, the tireless persevering, the enormous favors called in from
those both impacted by SMA and not, but who regardless took it up as
their passionate cause -- because the health of all babies is
important to all of us.

The things we witnessed people doing, the energy and creativity behind
each effort, the pure passion to prop the Gwendolyn Strong Foundation
and SMA on our collective shoulders and compete against these much
larger organizations to remain on the leaderboard -- person by person,
family by family, company by company, organization by organization,
ask by ask, email by email, tweet by tweet, vote by vote. Each of us
refused to relent. And we know we are only aware of a fraction of what
occurred in this movement. Take a look at this incredible list (click
here - http://bit.ly/7jioKN) of celebrities, athletes, musicians,
organizations, publications, blogs, etc. that threw their support
behind our cause. Humbling. Simply humbling.

The Gwendolyn Strong Foundation doesn't have a fancy national
headquarters or hundreds of chapters or a big marketing budget or a
team of employees. No, we're just two parents in a house in Santa
Barbara, California with two MacBook laptops caring for our terminally
ill two-year-old daughter and fighting any way we can to save her
life. But, in this Chase campaign the Gwendolyn Strong Foundation was
much, much more than the three of us. It was also two parents in a
house in New York. And three people in a house in Spain. And three
people in a house in Ohio. And 25 people at a company in Mississippi.
And one family in a house in Australia. And one person in a house in
Texas. And five people in a house in Arizona. And two people in a
house in the England. The list goes on and on. And together --
collectively -- UNITED -- relentlessly -- all of our amazing
individual efforts and our enormous unwavering passion amassed into
this wonderful grassroots effort.

We should all be so proud of ourselves. We have done something that
has never been done before. We always knew this Chase Community Giving
campaign was an incredible opportunity for SMA, but it has become so
much more than we could have ever imagined. We are so very honored to
have fought for this with you. Together, we have helped change the
future of this cruel disease.

-Bill Strong

Vote for a cure for SMA and Shira!!!!!

Brad Fisher
Dear family and friends on facebook. Please vote at http://www.voteforsma.comBy voting for the Gwendolyn Strong Foundation this charity will donate 100% of the $1,000,000 proceeds to SMA
research. This research could save our daughter Shira's life. It is free to vote and only takes a moment. ... Please pass this along to your friends. Thank you from the bottom of our hearts. Please paste this on your face book page and pass it along to all your friends. Thank you. Brad

IF

IF.....


IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: 'Hold on!'

If you can talk with crowds and keep your virtue,
' Or walk with Kings - nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man, my son!

by Rudyard Kipling

One of those weeks when you can feel yourself age

This week was another one of those weeks when you can feel yourself age. People look at you and say, “you look tired.” 2 weeks ago Shira started to get fevers off and on and by last Friday Shira was definitely sick. Last Saturday Shira crashed hard (lost her vital signs) from a mucous plug. There is always a fine line when working on a child in this type of emergency situation. These crashes are also known as extreme bradychardia. One minute you look at your child and they are smiling at you and the next minute there pupils are dilated and they are struggling with all their might to breath. If you don’t get your child breathing chances are by the time the emergency services show up at your door and start CPR or intubate your child they are going to have brain damage so I have made it a priority to become an expert at resuscitating Shira when in respiratory arrest.

I have heard enough stories and paid close enough attention to the bad experiences of other families with SMA Type 1 children to really put some effort into becoming proficient in resuscitating Shira. I haven’t had to give chest compressions to Shira because her heart has never stopped from these episodes but her saturation levels have reached into her 60’s for her heart rate and as low for her oxygen which is all very bad. You have to work fast and I have to say it’s terrifying watching your child slip away before your eyes. We have been to this place with Shira many many times and I know how she is going to die, I understand what it’s going to be like I just want to be there holding her in my arms. I don’t want to be away from her when this happens. When Shira was in respiratory arrest this time we worked on her hard and fast and there is a fine line as to how hard you can work on a child before you create other complications like vomiting. Unfortunately my over zealousness in this situation caused me to make Shira vomit which meant I had to quickly open her g-tube turn her on her side and deep suction her orally. So the poor kid was now in respiratory arrest and possibly aspirating vomit which can lead to bacterial pneumonia and serious complications and or damaged lungs and possible death. All us SMA parents are scared of the complications vomiting can bring. I stabilized Shira quite quickly but needless to say the poor girl was wiped out.

Shira’s saturation levels returned back to baseline of 100% for O2 but her heart rate was in the 160’s. We chose to stay home until morning so we spoke to the pediatric intensive care unit and told them we would hold off until morning and see how things go. The next day (I believe Sunday) Shira was on day 3 of fever and still had a very high heart rate. We didn’t want to chance the high heart rate was brought on by complications due to aspiration of vomit so we called the ambulance and headed into the PICU. The PICU was totally empty which is nice so we didn’t have to worry as much that Shira could contract other diseases. Shira was tested for Respiratory Synctal Virus (she had this at 6 months and 3 years of age and both times it was very very bad!) H1N1 and influenza A and B and all tests came back negative.

While in the PICU we also had a lot of blood work done on Shira to check how her diet was affecting her as well as her blood gases to check how well she was being ventilated.
It turns out Shira’s diet is spot on but she was over ventilated which was causing extremely low CO2 levels. We also have made arrangements to meet with an RT that will be bringing over a bunch of new bipap masks so we can replace the mask Shira has used since she was 6 months old.
While in the PICU we give Shira Chest Physio Therapy sessions every 4 hours or as needed around the clock; sleep deprivation torture won’t work on me anymore so if I get captured by extremists of some kind they will have to tickle me or something instead. While I hate to be in the intensive care unit with Shira I do enjoy the staff there and the support they give us is second to none! You get the full attention of 3 nurses and 1 doctor and there is no messing about it’s serious business in the PICU. We are very grateful to all of the staff and Dr. Jeff and Dr. Amanda (as Shira calls them). It’s a good feeling to have a team behind you that when things get at their ugliest you have a place to go and know Shira will be well taken care of. It’s amazing the work the PICU staff does on a daily basis, real life and death work!

So after 5 tiring days we are back home and thankful that our Sweet Pea is still with us, laughing, playing, singing. Shira teaches us how fragile life is and we give thanks for this life and time we have together as a family.

Sammy is doing well but the signs of stress are sometimes evident but all in all he is doing quite well. His teacher at school is an amazing person and very nurturing towards Sammy and what he has to live with and she gives him extra attention which we are so thankful for.

We are still downstairs as Sammy just has a nasty cough that isn’t going away and we just can’t take the chance that he might catch something else and spread it to Shira so we are down in Chez Shira for a while.

Shira is able to come off bipap now after his illness so today we went out for about an hour to get some fresh air and play with Sammy and some other kids at the park. “And that’s all I have to say about that.”

CanAssist Swing-Enabling System

Shira Fisher loves the thrill that comes from soaring through the air on a swing.


The four-year-old girl first tasted the freedom of swinging when her dad rigged a special swing for her in the backyard of their Victoria-area home. But because Shira has Spinal Muscular Atrophy, a genetic disorder that has severely affected her muscular development, she has never been able to swing anywhere else.

Shira longed to be able to swing alongside other children at some of the numerous parks in her neighborhood. While there are swings on the market for children with disabilities, none worked for Shira and could be attached and removed from a standard park swing.

"Shira's father, Brad, had an idea of what he wanted," recalls Brandon Fry, an engineering co-op student at CanAssist who was assigned to work on the request. "He already had a supportive seat designed for kids with special needs. He asked us to modify it so it could be attached easily to any park swing."

Brandon attached a seatbelt-like system to the back of the store-bought Tumble Form Chair. The chair's firm foam material safely supports a child in a reclined position, an important consideration for Shira. Then Brandon added a metal back support with two metal rods that link at both ends to a swing's two chains.

When Shira and Brad met CanAssist staff at a local park, Shira was so anxious to begin swinging that she was almost in tears. Being four, patience is not a readily available virtue at this point. But once Brandon buckled her into the new device, Shira was humming softly and smiling brightly.

"She wanted to get on it pretty quickly," says Brandon. "And once she was in, she wanted to go higher and higher."

Apparently Shira is a real adventurer, much to the chagrin of her protective dad.

Shira stayed and swung while the CanAssist crew packed up to go. Finally able to swing just like other kids, she didn't want her first adventure in the park to end too soon.

"Some people wish they could fly, some people wish they could simply swing," Shira's dad wrote to CanAssist later. "CanAssist made my daughter's wish to be able to swing with other children in any park come true. Thank you CanAssist."


Brandon ensures the seat
attaches securely to the swing. Shira's father, Brad, gives
Shira a push.

Shira Driving Her Power Chair Despite The Cold

Our Children. Our Gifts.

A new consciousness has permeated our household. Yesterday I changed Shira’s schedule. Shira used to go to bed at 10PM and wake around 9 A.M. and by the time she got off her respirator and all her physio was completed it would be around noon. I moved Shira’s schedule back by waking her at 7 or 7:30 A.M. Now Shira is waking at the same time as our 7 year old son Sammy and going to bed at the same time as he does. Shira feels so much older now that she is doing this. When it’s time for them to go to bed and we call out, “Ok kids it’s time for bed let’s get ready” you can see the joy in both of their faces. They are brother and sister, as one! The best thing about this time change is that it allows Shira and Sammy to spend much more time together. Shira used to be taking her Bipap (respirator) break the same time Sammy would get home from his after school activities which meant he had to be quite and I was unavailable because I was with Shira. Now Shira is finished with her bipap break by the time Sammy arrives home which means we can all play together.

Shira’s bath time is now at 5ish vs. 9 P.M which means Sammy can take part. I haven’t been in water with Sammy for quite some time but he really wanted to climb into the bath with us this evening. It was so beautiful and heart breaking to watch Sammy gently wash his sister and rinse her off. I washed Shira’s hair and Sammy rinsed her hair. Shira thought it was all quite amusing especially when I accidently raised her feet kicking Sammy in the head with Shira’s feet and being the little actor guy he is he sank under water. If you could only hear Shira’s laugh it is so gentle and sweet.

After the bath we continued playing in the living room. Shira was having a blast with her new Lion King Action set I found on Ebay for her. Sammy also loves it and wants one (the concept of sharing is a hard one to learn). The Lion King has taken over the household. Shira refers to me as Mufasa and I have to call her Simba; this goes on most of the day. The kids played for an hour and a half together with hardly any supervision accept for suctioning and position changes for Shira. Maxine and I sat in the kitchen just listening to them. Sam is such an amazing little boy. He is only 7 and he looks after his sister. He makes sure she has a toy in her hand, is comfortable, able to see everything he is doing and they talk sing, play make believe and interact deeply. Sammy is full of hugs and kisses for his sister and it just moves us so deeply to watch him and his gentleness.

At the end of play time it was fun to watch them argue over who gets to be Paul Stanley from Kiss. They ended their time together by watching some KISS videos on youtube. Shira has quite the will, she just does not give in to Sammy.

It took us so long to get to this place where our lives seem to be somewhat regular. More and more we witness our children playing effortlessly, without the boundaries of a life threatening disability and we wonder is this really happening to our family? They sound so “normal.” Without physically being in the same room with Shira you would never know she was as sick as she is except for her speech.

Every day Shira wakes up that day of life is a gift and every day we have Shira in our presence we are granted our greatest wish. I can only imagine what kind of man our son is going to grow up to be. I see this young boy love so deeply, strive for ways to understand her, touch and hold his sister so gently, communicate so deeply and all with no fear.

I know I don’t talk about our son as much as our daughter but I say it now, “We love you Sammy; you are amazing!”