Shirts!!!

We have shirts!  And they are awesome!  

Now, here are the sizes we have:

2T

3T

4T

5/6T

Youth Small

Men Small

Men Medium

Men Large

Men XLarge

Women (Junior Cut) Small

Women (Junior Cut) Medium

Women (Junior Cut) Large

Women (Junior Cut) XLarge

And Prices:

Adult $20

Youth/Child $15

Shipping $3 + $1 per additional shirt

If you want to order a shirt you can do so through the donate paypal button to the right.  OR you can mail a check to his bank account.  See below for address.  The adult sizes are $20 and kid sizes $15.  Shipping is kind of tricky but I think the easiest way to do it is $3 for the first shirt and $1 per additional shirt.  I am trusting all of you to do the math correctly, I feel pretty good about letting you know if you overpaid but asking for more money may make me uncomfortable :)  Please leave the details of sizes in the comments when you pay and make sure you leave your address for shipping.  If you are local, I'll bring it to you!  No shipping!  Yaya!

So here are the dirty details on why we chose paypal for Benson's fund raising.  We set up a non-profit account through paypal and linked that with a medical fund account at our local bank.  If you are on facebook, you probably see people doing medical fund raising through sites like gofundme.com or giveforward.com.  These sites are really popular and make it clear that you are raising money for medical reasons.  However, their fees are around 8%.  And I don't know about you, but when I donate money to something, I hate when the middle man gets a cut.  Paypal still takes a fee, if you use a debit or credit card. However, their fee is 2.7%.  AND, if your paypal account is linked to your bank account and you pay that way, there is no fee.  So, while paypal is a different way of going about it, we felt it gives more bang for the buck.  And, if the 2.7% bothers you but you don't feel comfortable linking paypal to your bank account, you still have the good ole paper check through snail mail.  It is tried and true.  When you write your check, make sure that it says that it is to: Donation Account for Benson Brady.  And send checks to

Guaranty Bank

1510 East Sunshine

Springfield, MO 65804

We didn't order Youth Medium due to some oversight.  Sorry for the inconvenience.

If you have any questions regarding sizing, shipping, or totals; send me a message or comment on this post and I'll get back to you asap.

Equipment Links

This is Benson's closet which is overflowing with medical equipment (and blessings).  Benson needed some equipment for his tube that our insurance could only provide at an outrageous cost.  So, I started searching around for other sources and thought I would share some of what I found in case someone else might need help.
A great source for equipment from other families is on Facebook.  There are at least three groups that I know of.  People will either post something they have or people can post something they are looking for. It is not always free, because sometimes families had to pay co-pays themselves and will ask for that payment back.  But sometimes they got their supplies from medicaid or medicare and you only need to pay shipping.  I did get burned one time using this method because she told me shipping was $15 but when I received the item it was definitely only $3.  I guess if she has a child with special needs, at least it went to someone with a lot of medical bills.  Anyway, use caution here.  Most times, people are honest.
Project Sloopy was able to donate 30 infinity pump bags, at no cost to us!  These bags are donated to their organization by families who have a surplus and then they ship them out to whoever needs them!
The Parker Lee Project is a similar foundation to Project Sloopy.  They send out donated equipment to families.  They received the exact pump that we were looking for and sent that to us along with 30 bags!  Coincidence?!  I think not!
The Oley Foundation works a little different.  People contact them who have extra equipment and they put you into contact with people that have the supplies you need.  All equipment is donated, you just pay shipping!
Rehab Equipment Exchange is another site that I am going to throw out here.  This site has a different kind of equipment, but it's equipment none the less.  I haven't gotten anything from this site, but I have browsed it many times.  I'm including it just in case it helps someone else out.

New Stander

 This stander is the Standing Dani, the first stander we got for Benson.  It was all the rage in the SMA community at the time we were in the market so we pushed hard for it.  But, it wasn't a great fit for Benson.  We've been making it work for the last year and a half but last week we were able to get a new one.  This one came from the MDA loaner closet.  We happened to hear they had a few in the closet.  Standers are tricky to pass around sometimes because they are often custom adjusted.  But this one fit Benson like a glove.  It's so much more supportive and I feel a lot better about his stander time!  It's ginormous, as all equipment seems to be, but whatever gets the job done, right?!  We have felt so blessed lately to have so many pieces come together for Benson's medical needs!

Unite 4 Peyton

We were very fortunate to be recipients of a grant through the Unite 4 Peyton Foundation.  All SMA families should check them out.  They do annual fundraisers and then apply that money towards grants for families with SMA.  I think it is absolutely awesome.  Our request was for hippotherapy, which is not paid for by insurance as it is still considered "experimental."  So far, we have been to two appointments and Benson is loving it!  He also tells people all the time that he rides horses.  His sister is terribly jealous, but she is being a good sport being supportive and letting him have "his thing."  We feel so incredibly blessed to have this opportunity for Benson.  I am very humbled by the hard work of this family and their generosity.  Their daughter, Peyton, has SMA type 1.  They know all to well the time and financial responsibility that SMA brings.  What they are doing is amazing and definitely most appreciated by us.

Hippotherapy is awesome.  It is something I have been passionate about since I first heard of it.  You can read more about it at the American Hippotherapy Association.  Here is a snippet of what they say:

Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.Equine movement provides multidimensional movement, which is variable, rhythmic and repetitive. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and. motor planning. Equine movement offers well-modulated sensory input to vestibular, proprioceptive, tactile and visual channels. During gait transitions, the patient must perform subtle adjustments in the trunk to maintain a stable position. When a patient is sitting forward astride the horse, the horse’s walking gait imparts movement responses remarkably similar to normal human gait. The effects of equine movement on postural control, sensory systems, and motor planning can be used to facilitate coordination and timing, grading of responses, respiratory control, sensory integration skills and attentional skills. Equine movement can be used to facilitate the neurophysiologic systems that support all of our functional daily living skills.